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1

Fortunato, Nicola, and Paolo Sbraccia. "Neoplasie emergenti tra i giovani adulti negli Stati Uniti: analisi dei dati provenienti dal registro tumori del Nord America." L'Endocrinologo 20, no. 5 (September 17, 2019): 313–14. http://dx.doi.org/10.1007/s40619-019-00623-z.

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Ragusa, Rosalia, Antonina Torrisi, Alessia Anna Di Prima, Antonietta A. Torrisi, Antonella Ippolito, Margherita Ferrante, Anselmo Madeddu, and Vincenzo Guardabasso. "Cancer Prevention for Survivors: Incidence of Second Primary Cancers and Sex Differences—A Population-Based Study from an Italian Cancer Registry." International Journal of Environmental Research and Public Health 19, no. 19 (September 26, 2022): 12201. http://dx.doi.org/10.3390/ijerph191912201.

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Background: The number of cancer survivors continues to increase, thanks to advances in cancer diagnosis and treatment. Unfortunately, the incidence of a second primary cancer (SPC) is also increasing, but limited studies reporting incidence data are available regarding multiple cancers. This study presents our observations on multiple primary malignant cancers, the associations between sites, and the inherent sex differences. Patients and methods: We report the data, disaggregated by sex, concerning the SPCs that were recorded in the “Registro Tumori Integrato” (RTI) a population-based cancer registry in Sicily, Italy, as observed in the period from 2003 to 2017, in a total population of approximately 2,300,000. SPCs were divided into synchronous and metachronous cancers. The International Classification of Diseases for Oncology, third edition (ICD-O-3), was used for topographical and morphological classifications. Multiple primary cancers with multi-organ primitiveness were selected from the database of the RTI by extracting patients with more than one diagnosis. SPCs had different histology or morphology from the particular cancer that was considered to be the index cancer case. Multicenter or multifocal cancers, or metastases, were excluded. The percentages of cancer by sex and topography, the average age of incidence, and a breakdown by age were computed. Results: Differences were observed between sexes in terms of incidence and site for SPCs. The most frequent SPC was skin cancer (20% of the SPCs observed). The associations among sites of multiple cancers are reported. Conclusion: There are many gaps in our knowledge of sex differences in cancer. The study of multiple primary cancers could bring more likely opportunities for evaluation of the cancer burden and trends that can be used to identify new research areas by population health programs, as well as for clinical researchers.
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Vukić, Tea, Nikolina Bašić-Jukić, Vesna Furić-Čunko, Ivana Jurić, and Željko Kaštelan. "Tumori nakon transplantacije bubrega." Medicina Fluminensis 56, no. 4 (December 1, 2020): 358–67. http://dx.doi.org/10.21860/medflum2020_245218.

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Završni stadij kronične bubrežne bolesti zahtijeva liječenje nadomještanjem bubrežne funkcije različitim metodama, od kojih je najbolja transplantacija bubrega, zbog značajno više stope preživljavanja i kvalitete života u usporedbi s dijalizom. U početcima transplantacijske medicine, kada su transplantacije izvođene samo u mlađih pacijenata, a preživljenje presatka bilo relativno kratko zbog visoke stope akutnih odbacivanja, zloćudni tumori predstavljali su manje važan problem. Vodeći uzrok gubitka presatka u vrijeme suvremene imunosupresije je smrt pacijenata s funkcionirajućim presatkom, a upravo su zloćudni tumori, nakon srčanožilnih bolesti i infekcija, na trećem mjestu uzročnika smrti u populaciji pacijenata s transplantacijom koja je sve starija i pod sve dužim kumulativnim djelovanjem imunosupresiva. Prema podatcima Registra za transplantaciju Australije i Novog Zelanda 10 % pacijenata razvije tumor nakon 10 godina, 25 % nakon 20 godina, a nakon 30 godina čak 40 % primatelja bubrega pod imunosupresivnom terapijom razvije tumor. U kohorti od 175 000 primatelja u Sjedinjenim Američkim Državama je identificirano 10 656 tumora, što je 2,1 puta više nego u općoj populaciji. Uočen je značajan porast rizika za više od 30 različitih primarnih tumora te snižena incidencija tumora dojke i prostate u odnosu na opću populaciju.
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Meel, Mukta, Nikita Choudhary, Mukesh Kumar, and Kusum Mathur. "Epidemiological Profiling and Trends of Primary Intracranial Tumors: A Hospital-Based Brain Tumor Registry from a Tertiary Care Center." Journal of Neurosciences in Rural Practice 12, no. 01 (January 2021): 145–52. http://dx.doi.org/10.1055/s-0040-1721622.

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Abstract Background and Objectives Hospital-based cancer registry is an essential tool for augmentation of the standard of care, administration motive, and resource for population-based cancer registries. Here, we presented hospital-based brain tumor registry (HBBTR) to outline a comprehensive epidemiological data, both clinical and histopathological, as well as trends of central nervous system tumors. In addition, we compare this data with national brain tumor data as well as an international brain tumor registry. Materials and Methods For the generation of this 7-year HBBTR data of all primary intracranial tumors operated, diagnosed, and registered at the Department of Pathology, Sawai ManSingh, between January 1, 2013 and December 31, 2019, was collected, analyzed, and compared with Tata Memorial Hospital, National Institute of Mental Health and Neurosciences, and Central Brain Tumor Registry of the United States. Results A total of 3,526 patients were of primary intracranial tumors. Out of which, male patients were 1,982 (56.2%), while 1,544 (43.8%) were female patients. Maximum proportion of tumors was in fifth decade. Overall, pediatric and adult patients constituted of 15.5 and 84.5% of the cases, respectively. Among all primary intracranial tumors, meningiomas (20%) were most common followed by glioblastoma multiformat (18%) and least common were germ cell tumors (0.1%) followed by pineal tumors (0.3%). In pediatric cohort astrocytic tumors (30.1%) are most common followed by embryonal tumors (20.8%), while in adults meningiomas (23.1%) were most common followed by glioblastomas (20.3%). Our registry showed similar trends of tumors with national data as compared with international data in median age of presentation. Conclusion This HBBTRs provide prevalence of primary intracranial tumors at a tertiary care center and could be a part of population-based registry.
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De Oliveira, Andrea Santos, Marcela Maria Nassar De Vasconcellos, Marcella de Brito Abath, Isabella Martins Barbosa da Silva Paes, and Emmanuelly Correia De Lemos. "Registros Hospitalares de Câncer em Pernambuco: da Gestão ao Registro." Revista Brasileira de Cancerologia 63, no. 1 (January 30, 2019): 21–28. http://dx.doi.org/10.32635/2176-9745.rbc.2017v63n1.152.

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Introdução: As neoplasias vêm ganhando destaque no perfil epidemiológico das doenças nas populações do mundo, inclusive no Brasil. Assim, a vigilância do câncer precisou adotar novas estratégias para se adequar à realidade. Uma delas, o Registro Hospitalar de Câncer (RHC), coleta dados de pacientes diagnosticados e/ou tratados para câncer, sendo importante para qualificar a assistência a eles prestada e para reconhecimento e disseminação de informações sobre morbimortalidade e fatores de risco para o câncer, visando à implementação de medidas para prevenção e controle. Objetivo: Descrever as estratégias utilizadas pela gestão estadual de Pernambuco para a qualificação do RHC e seus resultados. Métodos: Estudo transversal, descritivo, de abordagem mista. Para análise qualitativa, foram utilizados documentos da gestão estadual, de 2012 a 2015, relacionados aos RHC de Pernambuco. Para análise quantitativa, foram utilizadas algumas variáveis da ficha de tumor disponíveis ao público no Integrador RHC, do ano de 2012. Os resultados foram apresentados por meio de linha do tempo e tabela. Resultados: A análise documental revelou a adoção de várias estratégias para melhoria do RHC entre 2012 e 2015, foram elas: reuniões com as equipes das unidades hospitalares, implantação do projeto de diagnóstico e intervenção, capacitações e participações em eventos de âmbito nacional. O envio dos bancos de dados apresentou melhora no mesmo período. Quanto à incompletude das informações, apenas uma variável atingiu o patamar de qualidade desejado. Conclusão: As estratégias adotadas pela gestão estadual em conjunto com as equipes das unidades hospitalares parecem ter melhorado a qualidade dos RHC.
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Mercier, Kelly A., and Darragh M. Walsh. "The initiation, design, and establishment of the Desmoid Tumor Research Foundation Patient Registry and Natural History Study." Rare Tumors 11 (January 2019): 203636131988097. http://dx.doi.org/10.1177/2036361319880978.

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Desmoid tumors are locally invasive sarcoma, affecting 5–6 individuals out of 1,000,000 per year. The desmoid tumors have high rates of recurrence after resection and can lead to significant deterioration of the quality of life of patients. There is a need for a better understanding of the desmoid tumors’ patient experience from first symptoms through diagnosis, disease monitoring, and clinical treatment options. With the National Organization of Rare Disorders, the Desmoid Tumor Research Foundation Natural History Study was designed to be collected through the registry. This article describes the protocol for the Desmoid Tumor Research Foundation Natural History Study and some initial findings. The Desmoid Tumor Research Foundation Natural History Study Advisory Committee developed a series of questionnaires and longitudinal surveys, in addition to those from the National Organization of Rare Disorders for all of the rare diseases. These 13 surveys are designed to uncover initial symptoms, diagnosis process, disease monitoring, quality of life, treatments, as well as socioeconomic information. Since launching the Desmoid Tumor Research Foundation Registry and Natural History Study ( https://dtrf.iamrare.org ), more than 300 desmoid tumor patients have consented to the Desmoid Tumor Research Foundation Natural History Study and completed the Participant Profile. The majority of the respondents are between the ages of 21 and 50 years (76%), female (81.2%), White (91.5%), and live in the United States (47.1%). The majority of tumors are in the lower or upper extremity, (22.9%) followed closely by abdominal desmoid tumors (21.5%). Most are willing to donate specimens (89.9%) and participate in trials (97.2%). Ongoing efforts are addressing the demographic differences between the respondents and non-respondents and any selection bias based on access to the registry and study. The Desmoid Tumor Research Foundation Natural History Study is built on the largest desmoid tumors registry and has recruited more desmoid tumors participants since launching in September 2017. It will serve to fill desmoid tumors knowledge gaps and assist other researchers in their recruitment efforts for additional studies.
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7

Szövérfi, Zsolt, Áron Lazáry, and Péter Pál Varga. "Primary Spinal Tumor Registry in the National Centre for Spinal Disorders." Orvosi Hetilap 155, no. 19 (May 2014): 745–49. http://dx.doi.org/10.1556/oh.2014.29920.

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Primary spinal tumors are rare diseases. Primary spinal tumor registry would be useful to help decision making in this complex field of spine surgery. In this article the authors present the latest findings from the Primary Spinal Tumor Registry at the National Centre for Spinal Disorders, Hungary. The registry is based on a novel database management software, the REDCap electronic data capture system. It contains data of 323 patients treated surgically during an 18-year period. Among the 126 malignant tumors, the most frequent was chordoma (61 cases). In the case of benign tumors schwannoma showed the largest prevalence (45 cases). The authors conclude that due to the rarity of the disease and the complexity of the management, multicenter, prospective registries are required to provide high level of evidence. The structure of the Primary Spinal Tumor Registry in the National Centre for Spinal Disorders in Hungary is optimal for user-friendly, fast and secure data collection providing a prospective database for scientific researches and clinical follow-up. Orv. Hetil., 2014, 155(19), 745–749.
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8

Manasanch, Elisabet E., Jillian K. Smith, Andreea Bodnari, Jeannine McKinney, Catherine Gray, Theodore P. McDade, and Jennifer F. Tseng. "Tumor Registry Versus Physician Medical Record Review: A Direct Comparison of Patients With Pancreatic Neuroendocrine Tumors." Journal of Oncology Practice 7, no. 2 (March 2011): 111–16. http://dx.doi.org/10.1200/jop.2010.000097.

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Academic tumor registry analysis indicates many patients with pancreatic neuroendocrine tumors are not identified when compared with physician medical record review. Reasons include registry time lag and case-finding methodologies.
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Thorstenson, Andreas, Ulrika Harmenberg, Per Lindblad, Benny Holmström, Sven Lundstam, and Börje Ljungberg. "Cancer Characteristics and Current Treatments of Patients with Renal Cell Carcinoma in Sweden." BioMed Research International 2015 (2015): 1–5. http://dx.doi.org/10.1155/2015/456040.

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Methodology. Since the start in 2005 virtually all patients with newly diagnosed renal cell carcinoma (RCC) in Sweden are reported to the National Swedish Kidney Cancer Register (NSKCR). The register contains information on histopathology, nuclear grade, clinical stage, preoperative work-up, treatment, recurrence, and survival.Results. A total of 8556 patients with newly diagnosed RCC were registered in the NSKCR from 2005 to 2013 resulting in a coverage of 99% as compared to the Swedish Cancer Registry. The mean tumor size at detection decreased from 70 mm in 2005 to 64 mm in 2010. The proportion of patients who were incidentally detected increased. The proportion of patients with tumor stage T1a who underwent partial nephrectomy increased from 22% in 2005 to 56% in 2012. Similarly, the proportion of laparoscopically performed radical nephrectomies increased from 6% in 2005 to 17% in 2010. During the five years of follow-up 20% of the patients had a recurrence.Conclusion. Over the last decade there has been a trend of earlier detection and less advanced tumors at detection in patients with RCC. An increasing proportion of the patients undergo laparoscopic and nephron-sparing procedures.
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Kaplan, George W., William C. Cromie, Panayotis P. Kelalis, Igal Silber, and Edward S. Tank. "Prepubertal Yolk Sac Testicular Tumors - Report of the Testicular Tumor Registry." Journal of Urology 140, no. 5 Part 2 (November 1988): 1109–12. http://dx.doi.org/10.1016/s0022-5347(17)41974-4.

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11

Levy, David A., Robert Kay, and Jack S. Elder. "Neonatal Testis Tumors: A Review of the Prepubertal Testis Tumor Registry." Journal of Urology 151, no. 3 (March 1994): 715–17. http://dx.doi.org/10.1016/s0022-5347(17)35068-1.

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Kaplan, George W., William J. Cromie, Panayotis P. Kelalis, Igal Silber, and Edward S. Tank. "Gonadal Stromal Tumors: A Report of the Prepubertal Testicular Tumor Registry." Journal of Urology 136, no. 1 Part 2 (July 1986): 300–301. http://dx.doi.org/10.1016/s0022-5347(17)44847-6.

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13

Holcomb, George W. "Neonatal testis tumors: A review of the prepubertal testis tumor registry." Journal of Pediatric Surgery 30, no. 1 (January 1995): 137. http://dx.doi.org/10.1016/0022-3468(95)90670-3.

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14

Ma, Jie. "LINC-19. CURRENT SITUATION OF PEDIATRIC TUMORS OF CENTRAL NERVOUS SYSTEM IN CHINA - THE FIRST CNOG NATIONAL WIDE REPORT." Neuro-Oncology 22, Supplement_3 (December 1, 2020): iii382. http://dx.doi.org/10.1093/neuonc/noaa222.454.

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Abstract Tumors of Central Nervous System (CNS) are most seen solid tumor in childhood. Accounting approximate 25–30% of pediatric neoplasms, treatments on these tumors are complicated as they occur in different age ranges, have various types according to classification system and contain different characteristic molecular profiles. There are huge gaps of medical services for children with CNS tumors in different regions in China, which is blamed to limited medical resources and lack of epidemiology data for Chinese population. After the establishment of CNOG (Children’s Neuro-Oncology Group) in China in 2017, national wide registry (CNOG-MC001) was conducted to collect data on the basic information about pediatric tumors of CNS. Results of 4059 cases from 37 centers providing medical services for pediatric CNS tumors in 25 provinces from 6 greater administrative areas in China showed distinct tumor ratio, compared to worldwide data by WHO classification. The mean of age was 8.01 ± 4.73, with a male vs. female ratio as 1.48 to 1. Embryonal tumor, astrocytic & oligodendroglial tumors, and other astrocytic tumors were three most common tumor types in CNS of children. The lost follow-up rate was surprisingly high as 53.07%. In all, this is the first national wide registry for pediatric CNS tumor in China and the results attracted public and government’s attentions for further epidemic investigations.
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Sentani, Kazuhiro, Ikuko Ogawa, Kotaro Ozasa, Atsuko Sadakane, Mai Utada, Takafumi Tsuya, Hiroki Kajihara, Shuji Yonehara, Yukio Takeshima, and Wataru Yasui. "Characteristics of 5015 Salivary Gland Neoplasms Registered in the Hiroshima Tumor Tissue Registry over a Period of 39 Years." Journal of Clinical Medicine 8, no. 5 (April 26, 2019): 566. http://dx.doi.org/10.3390/jcm8050566.

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Salivary gland neoplasms are uncommon, and their epidemiology in Japan has not been well described. We conducted a retrospective review of salivary gland tumors registered in the Hiroshima Tumor Tissue Registry over a period of 39 years. The subjects were 5015 cases ranging in age from 6 to 97 (mean, 54.3) years old. The incidence of both benign tumors and malignant tumors increased with age until 60–69 years and then declined. Among the 5015 salivary gland neoplasms, 3998 (80%) were benign and 1017 (20%) were malignant. Pleomorphic adenoma (PA) was the most frequent benign tumor (68%), followed by Warthin tumor (26%). Adenoid cystic carcinoma (ACC) (27%) and mucoepidermoid carcinoma (MEC) (26%) were the two most frequent malignant tumors. Characteristically, there was a very low incidence of polymorphous adenocarcinoma in Japan. The average annual age-adjusted incidence rate per 100,000 population was 3.3 for benign tumors and 0.8 for malignant tumors. This is the large-scale multi-institutional analysis to describe the characteristics of salivary gland neoplasms, based on the pathological tissue registry data. We hope that the present data can contribute to early diagnosis and effective treatment of salivary gland tumors and to cancer prevention.
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Grigoletto, Veronica, Arianna Tagarelli, Catia Atzeni, Giovanni Cecchetto, Paolo Indolfi, Maria Debora De Pasquale, Francesco De Leonardis, et al. "Pleuropulmonary blastoma: a report from the TREP (Tumori Rari in Età Pediatrica) Project." Tumori Journal 106, no. 2 (September 5, 2019): 126–32. http://dx.doi.org/10.1177/0300891619871344.

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Introduction: Pleuropulmonary blastoma (PPB) is a rare, aggressive mesenchymal tumor of childhood. The Italian Tumori Rari in Età Pediatrica (TREP) Registry was the first in Europe dedicated to prospective data collection on rare pediatric tumors. We analyzed data from an Italian series of patients with PPB, focusing on the role of the TREP Project. Methods: We considered patients aged 0–14 with histologically confirmed diagnosis, registered in population-based cancer registries (before 2000) or the TREP Registry (2000 to 2014), and analyzed data on clinical characteristics, treatment, and outcome. Event-free survival (EFS) and overall survival (OS) were estimated. Relevant prognostic factors were identified performing a univariate analysis. Results: Thirty-seven cases were included (7 type I, 13 type II, 17 type III). The average diagnosis rate rose from 1.10 to 1.73 cases/year after the TREP Project started. All patients underwent surgery, 33 received chemotherapy, and 9 had radiotherapy. The median follow-up was 8.7 years. For type I, II, and III, respectively, the 5-year OS was 85.7% (33.4–97.9), 52.7% (23.4–75.5), and 57.8% (31.1–77.3); the 5-year EFS was 85.7% (33.4–97.9), 52.7% (23.4–75.5), and 52.9% (27.6–73.0). Favorable prognostic factors for EFS were Intergroup Rhabdomyosarcoma Study (IRS) stage I ( p = 0.03) and T1 tumor ( p = 0.05). A total of 78.3% of patients who had chemotherapy after 2000 received a standardized treatment. Conclusions: The TREP Registry showed an excellent capacity for registering cases of PPB. Patients received homogeneous treatment after the TREP Project started. Long-term outcomes were excellent for type I and unsatisfactory for type II and III. Tumor invasiveness and IRS stage were of prognostic value.
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Anzalone, Charles Lane, Amy Glasgow, Elizabeth Habermann, Brandon R. Grossard, Jamie J. Van Gompel, and Matthew L. Carlson. "Geographical Differences in Intracranial Meningioma Management: Examining 65,973 Patients across the United States." Journal of Neurological Surgery Part B: Skull Base 80, no. 06 (December 26, 2018): 547–54. http://dx.doi.org/10.1055/s-0038-1676376.

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Background Age, tumor size and location, overall health, and patient preference are primary considerations driving treatment decision-making for intracranial meningiomas. However, even for the same individual patient, treatment recommendations may vary between centers and providers. Objective To study associations between geography, disease presentation, and management of intracranial meningioma in the United States. Methods The population-based Surveillance, Epidemiology, and End Results(SEER) data were queried between 2004 and 2014 for cases of intracranial meningioma. Results A total of 65,808 patients with intracranial meningioma were identified. Univariate analyses demonstrated strong associations between geographic location, age, and size of tumor at presentation. The mean age for all registries was 64.2 years, with a range from 62.0 (Utah registry) to 66.6 (Detroit registry). The greatest proportion of small tumors (<1 cm) were identified in the Utah registry (13.9% of tumors), while the greatest proportion of large tumors (> 4cm) were noted in the Hawaii registry (30.7% of tumors). Multivariable analysis demonstrated that the impact of geography on treatment selection was just as important as other established variables. For example, the distribution in tumor size between New Mexico and Greater California registries is nearly identical; however, the odds ratio for surgery was 1.5 times greater for the New Mexico population. Conclusion These data suggest that disease presentation and treatment are significantly influenced by regional referral patterns, provider or institutional treatment preferences, and regional availability of subspecialty expertise. Understanding such biases is important for patients, referring physicians, and treatment providers in an effort to provide balanced counseling and treatment.
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Mercier, Kelly A., Lynne Hernandez, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, and Kelsey Milligan. "Quality of life and tumor location in patients with desmoid tumors: Data from the desmoid tumor research foundation natural history study." Journal of Clinical Oncology 37, no. 15_suppl (May 20, 2019): e18291-e18291. http://dx.doi.org/10.1200/jco.2019.37.15_suppl.e18291.

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e18291 Background: Desmoid tumors (DTs) are sarcoma, known to invade surrounding tissues, compromising organ function and complications. As few as 5 per 1 million people are diagnosed with DTs annually, which may be an underestimate of the actual affected population due to difficulty in correctly diagnosing the disease. To improve awareness of DTs and better inform treatment development, DTRF, in partnership with the NORD, launched the DTRF patient registry and natural history study. Here, we describe patient demographics, tumor location, and QOL in registry patients. Methods: The registry launched September 2017 and contains 15 surveys covering diagnostics, disease, treatment, care management, and quality of life. As of January 2019, 357 patients have completed 2,371 surveys. Results: Registry participants are mostly white (88%, 313/357), female (81%, 277/343), and reside in 27 countries with 80% (285/357) US-based. Median age at diagnosis is 33 and the time from onset of symptoms to diagnosis was more than 1 year for 54% (189/352). DT location was reported for 119 respondents at time of data collection. Most prevalent locations were joint /extremities (39%, 47/119), intra-abdominal (24%, 28/119), and chest wall (24%, 29/119). Multiple locations were indicated for 22% (26/119). QOL reported as very good or excellent ranged from 28% to 60%, depending on DT location. Conclusions: Patients with DTs have varied QOL and tumor locations. Data collection through the study is ongoing. [Table: see text]
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Schiff, David. "Gliomas following organ transplantation: analysis of the contents of a tumor registry." Journal of Neurosurgery 101, no. 6 (December 2004): 932–34. http://dx.doi.org/10.3171/jns.2004.101.6.0932.

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Object. The author and others have described a series of patients in whom gliomas have developed following solid organ transplantation. Additionally, patients infected with human immunodeficiency virus reportedly have an increased incidence of gliomas. The author sought to examine the association between the immunosuppressive state in organ transplant recipients and the development of gliomas. Methods. Reported cases of tumor in the transplant population of the Israel Penn International Transplant Tumor Registry (IPITTR) were examined. These cases were compared with predicted cases in the 2001 American Cancer Society (ACS) estimates. Of the 7256 malignant tumors listed in the IPITTR database, 19 (0.3%) were primary brain tumors, including 14 gliomas. Tumors known to occur at an increased frequency in transplant recipients accounted for a 1.6- to 2.9-fold increased percentage of cases in the IPITTR compared with 2001 ACS estimates. Tumors not thought to occur with an increased frequency in this population, such as gastrointestinal malignancy and lung cancer, had ratios of 0.19 to 0.35. The corresponding ratio for primary brain tumors was 0.19. None of the six cases previously described by the author and his colleagues was reported to the IPITTR. Conclusions. Primary brain tumors, including gliomas, do not appear to be overrepresented in the IPITTR, indicating that they may not arise with increased frequency in transplant recipients. Nevertheless, one cannot exclude the possibility that neurooncologists may have underreported such cases to this voluntary tumor registry.
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Tamary, Hannah, Blanche P. Alter, Daniella Nishri, and Philip S. Rosenberg. "Israeli Fanconi Anemia Registry." Blood 112, no. 11 (November 16, 2008): 4125. http://dx.doi.org/10.1182/blood.v112.11.4125.4125.

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Abstract Using epidemiological data from retrospective cohorts of patients with Fanconi Anemia (FA) in North America and Germany a quantitative model to estimate bone marrow failure (BMF) and cancer risk was previously generated. To evaluate generalizability to another population, and to determine the risks for adverse outcomes in Israel, we created an Israeli FA registry and used the model to evaluate complications. We reviewed patient charts of 66 patients with FA diagnosed in Israel between 1964–2005. The data base included demographic information, as well as data describing the congenital abnormalities, FA complementation groups, BMT course and malignancies. Thirty six (36) patients were of Jewish origin [Ashkenzi 7, Sephardic 23, mixed 6] and 30 of Arabic origin. The first adverse event was bone marrow failure (BMF) in 35 patients (53%), hematological malignancy in 7 (11%) and 2 solid tumors in each of 3 patients (5%). The cause-specific hazard of BMF peaked at 10.5%/year at age 10 years (95% CI: 6.7–14.1%/year). The hazard of AML/ALL and MDS were stable at 0.9%/year (95% CI: 0.42–1.85%/year) and 1.4%/year (95% CI: 0.76–2.49%/year) respectively. The cumulative incidence of each outcome to age 32 was 70% for BMF, 13% for AML/ALL, and 17% for solid tumor. A five item congenital abnormality score was significantly associated with the risk of BMF (P = 0.009). The ratio of observed to expected cancer was 71 for all cancers [50 for solid tumors, 175 for leukemia] and &gt;11,000 for myelodysplastic syndrome. Significantly elevated ratios of observed to expected cancers were observed for head and neck squamous cell carcinoma in 2 patients (986-fold), tumor of larynx (13,238-fold), vulva (3,701-fold), cervix (244-fold) and breast (88-fold). The complementation group was known in 41 patients [A 25 (63%), C 9 (22%), G 6 (15%), and D1 1 (2%)]. However, associations between complementation groups and specific outcomes were not significant. Despite the different ethnic background and the smaller number of FA patients in the Israeli cohort the risk estimates compared with the US and German cohorts were similar. As previously suggested the congenital abnormality score was significantly associated with the risk of BMF; an extraordinary risk of developing AML/MDS and later specific solid tumors was also found.
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Graf, Ramona, Andreas Pospischil, Franco Guscetti, Daniela Meier, Monika Welle, and Martina Dettwiler. "Cutaneous Tumors in Swiss Dogs: Retrospective Data From the Swiss Canine Cancer Registry, 2008–2013." Veterinary Pathology 55, no. 6 (August 21, 2018): 809–20. http://dx.doi.org/10.1177/0300985818789466.

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Data collected in animal cancer registries comprise extensive and valuable information, even more so when evaluated in context with precise population data. The authors evaluated 11 740 canine skin tumors collected in the Swiss Canine Cancer Registry from 2008–2013, considering data on breed, sex, age, and anatomic locations. Their incidence rate (IR) per 100 000 dogs/year in the Swiss dog population was calculated based on data from the official and mandatory Swiss dog registration database ANIS. The most common tumor types were mast cell tumors (16.35%; IR, 60.3), lipomas (12.47%; IR, 46.0), hair follicle tumors (12.34%; IR, 45.5), histiocytomas (12.10%; IR, 44.6), soft tissue sarcomas (10.86%; IR, 40.1), and melanocytic tumors (8.63%; IR, 31.8) with >1000 tumors per type. The average IR of all tumor types across the 227 registered breeds was 372.2. The highest tumor incidence was found in the Giant Schnauzer (IR, 1616.3), the Standard Schnauzer (IR, 1545.4), the Magyar Vizsla (IR, 1534.6), the Rhodesian Ridgeback (IR, 1445.0), the Nova Scotia Duck Tolling Retriever (IR, 1351.7), and the Boxer (IR, 1350.0). Mixed-breed dogs (IR, 979.4) had an increased IR compared to the average of all breeds. Previously reported breed predispositions for most tumor types were confirmed. Nevertheless, the data also showed an increased IR for mast cell tumors and melanocytic tumors in the Nova Scotia Duck Tolling Retriever and for histiocytomas in the Flat Coated Retriever. The results from this study can be taken into consideration when selecting purebred dogs for breeding to improve a breed’s health.
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North, James H., and Mark S. Pack. "Malignant Tumors of the Small Intestine: A Review of 144 Cases." American Surgeon 66, no. 1 (January 2000): 46–51. http://dx.doi.org/10.1177/000313480006600110.

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Cancer of the small intestine represents less than two per cent of all the malignant tumors of the gastrointestinal tract. Because they are infrequent tumors, a review of a tumor registry was performed to analyze response to treatment of the disease and prognostic factors. A retrospective review of patients with primary cancer of the small intestine was performed using the Department of Defense Tumor Registry. The registry was accessed to determine stage, types of cancer, intervention, and patient outcomes. TNM staging and follow-up were available on 144 patients from 1970 to 1996. Median follow-up was 38.9 months. There were 92 (64%) males and 52 (38%) females. The median age was 55.7 years. The types of small intestinal cancer included 68 patients (47%) with adenocarcinoma, 41 patients (28%) with carcinoid, 18 patients (13%) with leiomyosarcoma, and 17 patients (12%) with lymphoma. The overall 5-year survival was 57 per cent and the median survival was 52 months. Survival of patients with adenocarcinoma was not dependent on location within the small bowel. Survival was best for early-stage tumors and when lesions could be completely resected.
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Fumagalli, Luca, Edoardo Botteri, Marzia Adelia Locatelli, Lucia Gelao, Carmen Criscitiello, Silvia Manunta, Nicole Rotmensz, Aron Goldhirsch, and Giuseppe Curigliano. "Second primary tumors in cancer patients: A retrospective analysis based on institutional tumor registry." Journal of Clinical Oncology 31, no. 15_suppl (May 20, 2013): 1595. http://dx.doi.org/10.1200/jco.2013.31.15_suppl.1595.

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1595 Background: The relative risk of developing a second tumor by site of primary tumor or gender is still unclear. Methods: We retrospectively analyzed data of 24,224 consecutive patients admitted to the European Institute of Oncology between 2000 and 2006 for a first primary invasive tumor. All the data were extracted from the institutional Tumor Registry. All tumors were registered and indexed within the same patient’s record. We limited the analysis to the patients who were diagnosed and received at least one treatment in IEO for their first primary tumor. Follow-up was based on the last registered patient’s control visit. Cumulative incidence was compared across different subgroups by means of the Gray test. The observed cases of second metachronous primary tumors was compared with the number of cancers we expected from the general Italian population. We used the standardized incidence ratio (SIR), defined as the ratio of the number of second cancers observed to the number of second cancers expected, to estimate the relative risk of second cancers, and we calculated 95% confidence intervals (95% CIs) by applying the Wilson and Hilferty approximation for chi-square percentiles. Results: In this population the 5-year cumulative incidence of a second tumor on the average population was 5.0%, SIR (CI 95%) was 1.3 (1.2-1.4). The Table reports details on observed versus expected second metachronous primary tumors by first tumor site. Conclusions: Cancer patients have a higher risk of a second primary tumor than general population. [Table: see text]
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Raufi, Alexander, Emma Safran, Rimini Breakstone, and Khaldoun Almhanna. "Comparison of tumor registry reporting and gastrointestinal oncologist determination of intrahepatic cholangiocarcinomas: A quality review analysis." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): e16113-e16113. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.e16113.

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e16113 Background: Diagnosing cholangiocarcinoma (CCA) can be challenging and these tumors are often misclassified as adenocarcinomas of unknown primary (AUP). Accurate identification is critically important to determine the true incidence and to understand the epidemiology of these cancers. Methods: As a quality assessment, gastrointestinal oncologists at our institution reviewed the tumor registry records of all patients diagnosed with intrahepatic CCA, extrahepatic CCA, hepatocellular carcinoma, adenocarcinoma of unknown primary, and adenocarcinoma not otherwise specified. Mixed hepatocellular/cholangiocarcinoma was excluded. Results: Initially the tumor registry reported 37 cases of intrahepatic CCA at the Lifespan Cancer Institute/Rhode Island Hospital between 2017-2020. However, review of the registry records by gastrointestinal oncologists revealed 10 additional cases of intrahepatic cholangiocarcinoma. These cases had been entered into the tumor registry with diagnosis codes of liver adenocarcinoma NOS (n = 8), liver cancer (n = 1) and liver NOS (n = 1). Following review, a total of 47 cases of intrahepatic CCA and 59 cases of extrahepatic CCA were identified at our institution between 2017-2020. The mean age of intrahepatic CCA was 58 and 48% were women. The mean age of extrahepatic CCA was 73 and 42% were women. The updated numbers were reported to the state tumor registry. Conclusions: Difficulties in diagnosis of cholangiocarcinoma may underestimate the true incidence of this disease in the United States. Careful review of tumor registry data across the United States would likely reveal large discrepancies between actual and reported incidence of this disease and further study is warranted.
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Raufi, Alexander, Emma Safran, Rimini Breakstone, and Khaldoun Almhanna. "Comparison of tumor registry reporting and gastrointestinal oncologist determination of intrahepatic cholangiocarcinomas: A quality review analysis." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): e16113-e16113. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.e16113.

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e16113 Background: Diagnosing cholangiocarcinoma (CCA) can be challenging and these tumors are often misclassified as adenocarcinomas of unknown primary (AUP). Accurate identification is critically important to determine the true incidence and to understand the epidemiology of these cancers. Methods: As a quality assessment, gastrointestinal oncologists at our institution reviewed the tumor registry records of all patients diagnosed with intrahepatic CCA, extrahepatic CCA, hepatocellular carcinoma, adenocarcinoma of unknown primary, and adenocarcinoma not otherwise specified. Mixed hepatocellular/cholangiocarcinoma was excluded. Results: Initially the tumor registry reported 37 cases of intrahepatic CCA at the Lifespan Cancer Institute/Rhode Island Hospital between 2017-2020. However, review of the registry records by gastrointestinal oncologists revealed 10 additional cases of intrahepatic cholangiocarcinoma. These cases had been entered into the tumor registry with diagnosis codes of liver adenocarcinoma NOS (n = 8), liver cancer (n = 1) and liver NOS (n = 1). Following review, a total of 47 cases of intrahepatic CCA and 59 cases of extrahepatic CCA were identified at our institution between 2017-2020. The mean age of intrahepatic CCA was 58 and 48% were women. The mean age of extrahepatic CCA was 73 and 42% were women. The updated numbers were reported to the state tumor registry. Conclusions: Difficulties in diagnosis of cholangiocarcinoma may underestimate the true incidence of this disease in the United States. Careful review of tumor registry data across the United States would likely reveal large discrepancies between actual and reported incidence of this disease and further study is warranted.
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Watanabe, Yuko, Yoshitaka Narita, and Takamasa Kayama. "EPID-09. THE INCIDENCE OF PRIMARY BRAIN TUMORS IN CHILDREN IN JAPAN BASED ON 2016 NATIONAL CANCER REGISTRY IN JAPAN." Neuro-Oncology 22, Supplement_3 (December 1, 2020): iii320. http://dx.doi.org/10.1093/neuonc/noaa222.195.

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Abstract The national cancer registries began in January 2016 and the actual number of cancer patients in 2016 including primary brain tumors in Japan was released as a preliminary report in January 2019. According to the report, 667 incidence of pediatric brain tumors were reported in aged 0–14 years (boy: 382; girl: 285), of them 537 patients underwent surgery, chemotherapy, or radiation therapy (diagnosis: 516, undiagnosed: 21), and 130 patients were followed up without any treatments. The breakdown of tumor types was 279 Neuroepithelial tumors, 73 Embryonal tumors (61 Medulloblastomas), and 63 Germ Cell Tumors (GCTs). The crude rate per 100,000 population in 2016 was 4.23 for all pediatric brain tumors, 1.77 for Neuroepithelial tumor, 0.39 for Medulloblastoma, and 0.40 for GCTs. In comparison, the United States CBTRUS2019 (2012–2016) reported that the age-adjusted incidence rates per 100,000 population in the United States was 5.74 for all pediatric brain tumors, 4.15 for Neuroepithelial tumors, 0.48 for Medulloblastoma, and 0.22 for GCTs. The age-adjusted incidence in Japan based on the US population in 2000 was 4.21 for all pediatric brain tumors, Neuroepithelial tumor 1.77, Medulloblastoma 0.39, and GCTs 0.39, suggesting that the incidence of Neuroepithelial tumor and Medulloblastoma is lower whereas that of GCTs is approximately twice comparing to the US. By taking advantage of the national cancer registry data, which was publicly opened to researchers in 2019, we report the incidence of primary brain tumors and its comparison worldwide based on the re-classification criteria of primary brain tumors including benign tumor.
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González Mariño, Mario Arturo. "Causas de muerte por cáncer de mama en Colombia." Revista de Salud Pública 18, no. 3 (June 27, 2016): 344. http://dx.doi.org/10.15446/rsap.v18n3.30483.

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<p>Objetivo Revisar las causas directas de muerte por cáncer de mama en Colombia según datos de los certificados de defunción en el año 2008.Material y Métodos Se revisaron las causas directas de muerte en pacientes cuyo código de causa básica de defunción fue el de tumor maligno de la mama según el registro de defunciones del Departamento Nacional de Estadística de Colombia (DANE) en el año 2008. Se evalúa su distribución por código de diagnóstico de la causa directa de muerte, grupos de edad, nivel educativo, estado civil, seguridad social y sitio de defunción.Resultados Las principales causas directas de muerte en mujeres fueron insuficiencia o falla respiratoria, paro cardiorespiratorio, falla orgánica múltiple o multisistémica, cáncer de seno y cáncer de mama metastásico. La mayoría de las muertes tuvieron el código C509 y se presentaron en mayores de 50 años. En hombres la causa más frecuente fue la falla respiratoria. Conclusiones Las principales denominaciones anotadas en los registros de defunción como causa directa de muerte por cáncer de mama fueron insuficiencia, paro respiratorio y paro cardiorespiratorio. Sin embargo, se evidencia que esto surge por problemas en el registro al no ceñirse a la Clasificación internacional de enfermedades (CIE-10). Se requiere mejorar la calidad de los registros de defunción para aprovechar la información que aporta este documento.</p>
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Albishi, Abdullah Mohammed, Ahmed Mostafa Mohamed Mostafa, Hatim Mahgoub Ali, Yahia Atiah Alhagawi, Mohamed F. Bazeed, Mahmoud R. A. Hussein, Elshfeia Elhag Mohmed Ali Aloba, and Ahmed Youssef Aboelyazid. "Incidence of Gastrointestinal Neuroendocrine Tumor: Case Series, Armed Forces Hospital Southern Region, Hospital-Based Tumor Board Registry." Case Reports in Oncological Medicine 2020 (October 20, 2020): 1–7. http://dx.doi.org/10.1155/2020/8819392.

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Neuroendocrine tumors are aggressive and rare tumors which can occur almost everywhere in the body. The annual incidence of neuroendocrine tumors is 2.5-5 per 100000. We report seven cases of gastrointestinal neuroendocrine tumors which were diagnosed and treated at our hospital from the time period of 2016-2018 knowing that the total number of our hospital tumor board cases registry during the same period was 444 cases.
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Ekdahl, Linnea, Emelie Wallin, Emilia Alfonzo, Petur Reynisson, Celine Lönnerfors, Pernilla Dahm-Kähler, Henrik Falconer, and Jan Persson. "Increased Institutional Surgical Experience in Robot-Assisted Radical Hysterectomy for Early Stage Cervical Cancer Reduces Recurrence Rate: Results from a Nationwide Study." Journal of Clinical Medicine 9, no. 11 (November 19, 2020): 3715. http://dx.doi.org/10.3390/jcm9113715.

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The aim of this study was to evaluate the impact of institutional surgical experience on recurrence following robotic radical hysterectomy (RRH) for early stage cervical cancer. All women in Sweden who underwent an RRH for stage IA2-IB1 cervical cancer at tertiary referral centers from its implementation in December 2005 until June 2017 were identified using a Swedish nationwide register and local hospital registers. Registry data were controlled by a chart review of all women. Recurrence rates and patterns of recurrence were compared between early and late (≤50 vs. >50 procedures) institutional series. Six hundred and thirty-five women were included. Regression analysis identified a lower risk of recurrence with increased experience but without a clear cut off level. Among the 489 women who did not receive adjuvant radio chemotherapy (RC-T), the rate of recurrence was 3.6% in the experienced cohort (>50 procedures) compared to 9.3% in the introductory cohort (p < 0.05). This was also seen in tumors < 2 cm regardless of RC-T (p < 0.05), whereas no difference in recurrence was seen when analyzing all women receiving RC-T. In conclusion, the rate of recurrence following RRH for early stage cervical cancer decreased with increased institutional surgical experience, in tumors < 2 cm and in women who did not receive adjuvant RC-T.
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Ostrom, Quinn T., Nirav Patil, Gino Cioffi, Kristin Waite, Carol Kruchko, and Jill S. Barnholtz-Sloan. "CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2013–2017." Neuro-Oncology 22, Supplement_1 (October 2020): iv1—iv96. http://dx.doi.org/10.1093/neuonc/noaa200.

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Abstract The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control (CDC) and National Cancer Institute (NCI), is the largest population-based registry focused exclusively on primary brain and other central nervous system (CNS) tumors in the United States (US) and represents the entire US population. This report contains the most up-to-date population-based data on primary brain tumors (malignant and non-malignant) and supersedes all previous CBTRUS reports in terms of completeness and accuracy. All rates (incidence and mortality) are age-adjusted using the 2000 US standard population and presented per 100,000 population. The average annual age-adjusted incidence rate (AAAIR) of all malignant and non-malignant brain and other CNS tumors was 23.79 (Malignant AAAIR=7.08, non-Malignant AAAIR=16.71). This rate was higher in females compared to males (26.31 versus 21.09), Blacks compared to Whites (23.88 versus 23.83), and non-Hispanics compared to Hispanics (24.23 versus 21.48). The most commonly occurring malignant brain and other CNS tumor was glioblastoma (14.5% of all tumors), and the most common non-malignant tumor was meningioma (38.3% of all tumors). Glioblastoma was more common in males, and meningioma was more common in females. In children and adolescents (age 0-19 years), the incidence rate of all primary brain and other CNS tumors was 6.14. An estimated 83,830 new cases of malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US in 2020 (24,970 malignant and 58,860 non-malignant). There were 81,246 deaths attributed to malignant brain and other CNS tumors between 2013 and 2017. This represents an average annual mortality rate of 4.42. The 5-year relative survival rate following diagnosis of a malignant brain and other CNS tumor was 36.0% and for a non-malignant brain and other CNS tumor was 91.7%.
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Lynes, John, Sebastian Rubino, Arnold Etame, James Liu, Andre Beer-Furlan, Nam Tran, Alexia Ruiz, Rob Macaulay, and Michael Vogelbaum. "TMIC-53. DEVELOPMENT OF A GEO-TAGGED TUMOR SAMPLE REGISTRY; LINKAGE OF TUMOR SAMPLE LOCATION TO IMAGING CHARACTERISTICS." Neuro-Oncology 24, Supplement_7 (November 1, 2022): vii283. http://dx.doi.org/10.1093/neuonc/noac209.1097.

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Abstract Background Significant intra- and inter-heterogeneity exists in gliomas. This provides clinical, radiological, diagnostic, and treatment challenges. To date, there have been few efforts to comprehensively catalog information obtained in the operating room that spatially links neuro-navigation localization to imaging characteristics, gross intraoperative visual findings, and pathological/molecular features. The value of this spatial localization is probably greatest in high grade gliomas, which have been demonstrated to have intra-tumoral histological and genetic/epigenetic heterogeneity. METHODS An IRB-approved institutional registry of patients undergoing clinically-indicated surgery with use of an image-guidance system (IGS) was launched in November 2019 and as of June 1, 2022 includes nearly 500 patients, of which 243 were diagnosed with gliomas. Intraoperatively, locations within the gross tumor or tumor-infiltrated brain were sampled at each surgeon’s discretion, and each sample was linked to their precise location with the IGS system (“geo-tagged”). The registry includes information regarding surgeon; anesthesia technique; use of intraoperative tumor fluorescence; tumor location and volume; pathologic diagnosis and molecular features, and sample number. RESULTS Of 243 gliomas, 26 were low grade and 217 were high grade with 174 being glioblastoma. For enhancing tumors, volume of enhancement ranged from 0.31 to 127.0 cm3 with an average of 22.9 cm3. Tumors were widely distributed throughout the cerebrum with 133 left-sided tumors, 110 right-sided and 32 spanning multiple lobes or deep subcortical structures including the brainstem. 51% of surgeries were under awake anesthesia, and 40% were performed using fluorescence guidance. The average number of navigation image-linked samples collected per tumor was 3.67; 3.48 in low grade gliomas, and 3.69 in high grade gliomas. Samples are archived in frozen and/or formalin-fixed, paraffin-embedded formats for future research. CONCLUSION This registry provides the foundation for correlation of imaging, intraoperative findings, and pathology in brain tumors, and it will support detailed laboratory/translational investigations addressing tumor heterogeneity.
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Shahriar, Mohammad Hasan, Mohammad Kamal, Tariqul Islam, Muhammad Rakibuz-Zaman, and Habibul Ahsan. "Tumor Burden in Bangladesh: A Pathology-Based Tumor Registry Overview." Journal of Global Oncology 3, no. 2_suppl (April 2017): 34s. http://dx.doi.org/10.1200/jgo.2017.009548.

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Abstract 15 Background: Cancer is a public health concern in both developed and developing countries. Appropriate prevention and surveillance of cancer deserves urgent attention as incidence of the disease is expected to double in the next 20 to 25 years in most developing nations. Given the dearth of basic cancer-related data in Bangladesh and feasibility considerations, Bangabandhu Sheikh Mujib Medical University, in collaboration with University of Chicago, has continued a pathology-based tumor registry in Bangladesh for the last 4 years (from 2012 to present) at Bangabandhu Sheikh Mujib Medical University. We undertook this work to assess the incidence and prevalence of major cancers in Bangladesh according to a histopathology-based cancer registry by establishing a functional network among pathologists working at different government and private sectors as well as to collect tissue and paraffin blocks from patients. Methods: Basic epidemiologic and socioeconomic data were obtained via questionnaire from all patients (N = 13,040 patients; collected from 2012 to 2014) who came to the department laboratory for diagnostic purposes. Histopathologic and/or cytopathologic data were obtained from the department database. Results: Middle-aged (30 to 50 years) adults are more vulnerable (62%) than other extreme age groups to the development of different tumors, including cancer. Women (61.11%) are more prone to develop tumors than men (39.89%). Low socioecomic status (86.73%) and poor education level (less than grade 5; 69.48%) have a key impact on the development of tumors in Bangladesh. In terms of occupation, housewife (49%) is the most vulnerable group compared with all others. Skin tumor (55.6%) is the most common benign tumor among men, and breast tumor (33.28%) among women. In the case of malignancy, uterine malignancy (23.38%) is the most common in women, and mouth and oral cavity cancer (11.7%) in men. The uterus (13.18%) is the most common tumor site, followed by breast (10.69%), among all cases. Conclusion: Although such an effort underestimates the true occurrence of cancers in this population, these data are valuable for formulating any plan or program for epidemiology, prevention, and treatment of cancers at the local and/or national level. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST No COIs from the authors.
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33

Almeda, Alison Figueroa, Susan M. Grimes, Giwon Shin, Hojoon Lee, Ignacio Alberto Wichmann, Stephanie Greer, and Hanlee P. Ji. "The Gastric Cancer Registry Genome Explorer: A tool for genomic discovery." Journal of Clinical Oncology 41, no. 4_suppl (February 1, 2023): 434. http://dx.doi.org/10.1200/jco.2023.41.4_suppl.434.

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434 Background: The Gastric Cancer Registry (GCR) collects clinical questionnaire data and biospecimens from gastric cancer (GC) patients and individuals at high risk for GC (through family history of GC or a germline CDH1 mutation). Its purpose is to facilitate research into better detection and treatment strategies for GC. In 2020, the GCR Genome Explorer (GCR-GE), a publicly accessible and interactive database of clinical and genomic data, was launched to meet this goal. Methods: We generated genomic datasets from participants when GC status and archival gastric tumor tissue were available. We processed the tumor tissue (and paired normal tissue when possible) for whole genome, whole exome, and bulk RNA sequencing. The following genomic features were identified: copy number variations, gene mutations, gene expression, microbiome composition, estimation of tumor-infiltrating immune cells, and tumor neoantigens. We populated (1) all genomic alterations identified from GCR sequencing data, and (2) demographic and pathologic data regarding the tumor that were compiled from participant questionnaires and medical records into the GCR-GE. In addition, sequencing files from the Cancer Genome Atlas (TCGA) were similarly analyzed and uploaded as external datasets. Features of the GCR-GE include cross-study comparisons, study summaries, and queries down to the individual gene, neoantigen, and patient level. Results: In total, 243 GC patients donated tumor samples. The new GCR-GE release contains genomic datasets for 214 of these tumors, as well as datasets for 443 gastric tumors and 185 esophageal tumors from TCGA. Data generation was possible thanks to 756 subjects who enrolled in the GCR from 2011-2022. Most subjects were diagnosed with GC only (N=487), but interestingly, some met multiple criteria. For instance, 10 GC patients had a family history; 10 had a germline CDH1 mutation; and 21 patients had GC, a family history, and a germline CDH1 mutation. Efforts to upload additional datasets are ongoing. All data in the GCR-GE is downloadable. Conclusions: The GCR-GE is a comprehensive resource of genomic and clinical data. Given its accessibility, ease of use, and large cohort sizes, the GCR-GE presents a highly valuable tool for accelerating GC research.
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Kay, Robert. "PREPUBERTAL TESTICULAR TUMOR REGISTRY." Urologic Clinics of North America 20, no. 1 (February 1993): 1–5. http://dx.doi.org/10.1016/s0094-0143(21)00456-0.

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Kay, Robert. "Prepubertal Testicular Tumor Registry." Journal of Urology 150, no. 2 Part 2 (August 1993): 671–74. http://dx.doi.org/10.1016/s0022-5347(17)35581-7.

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Mohr, U., R. Bader, H. Ernst, R. Ettlin, C. Gembardt, J. H. Harleman, F. Hartig, et al. "Tumor Registry Data Base." Experimental Pathology 38, no. 1 (January 1990): 1–18. http://dx.doi.org/10.1016/s0232-1513(11)80191-x.

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37

Ostrom, Quinn T., Gino Cioffi, Haley Gittleman, Nirav Patil, Kristin Waite, Carol Kruchko, and Jill S. Barnholtz-Sloan. "CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2012–2016." Neuro-Oncology 21, Supplement_5 (October 2019): v1—v100. http://dx.doi.org/10.1093/neuonc/noz150.

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AbstractThe Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control and Prevention and National Cancer Institute, is the largest population-based registry focused exclusively on primary brain and other central nervous system (CNS) tumors in the United States (US) and represents the entire US population. This report contains the most up-to-date population-based data on primary brain tumors available and supersedes all previous reports in terms of completeness and accuracy. All rates are age-adjusted using the 2000 US standard population and presented per 100,000 population. The average annual age-adjusted incidence rate (AAAIR) of all malignant and non-malignant brain and other CNS tumors was 23.41 (Malignant AAAIR = 7.08, non-Malignant AAAIR = 16.33). This rate was higher in females compared to males (25.84 versus 20.82), Whites compared to Blacks (23.50 versus 23.34), and non-Hispanics compared to Hispanics (23.84 versus 21.28). The most commonly occurring malignant brain and other CNS tumor was glioblastoma (14.6% of all tumors), and the most common non-malignant tumor was meningioma (37.6% of all tumors). Glioblastoma was more common in males, and meningioma was more common in females. In children and adolescents (age 0–19 years), the incidence rate of all primary brain and other CNS tumors was 6.06. An estimated 86,010 new cases of malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US in 2019 (25,510 malignant and 60,490 non-malignant). There were 79,718 deaths attributed to malignant brain and other CNS tumors between 2012 and 2016. This represents an average annual mortality rate of 4.42. The five-year relative survival rate following diagnosis of a malignant brain and other CNS tumor was 35.8%, and the five-year relative survival rate following diagnosis of a non-malignant brain and other CNS tumors was 91.5%.
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D'Avila Leite, Pollyanna, Andrew M. Gaya, Rachelle Marie Lanciano, Jun J. Yang, Oliver Blanck, Robert Urwin, Joanne N. Davis, and Anand Mahadevan. "Stereotactic body radiotherapy (SBRT) for colorectal liver metastasis: Clinical outcomes from the international multi-institutional RSSearch Patient Registry." Journal of Clinical Oncology 37, no. 15_suppl (May 20, 2019): e15040-e15040. http://dx.doi.org/10.1200/jco.2019.37.15_suppl.e15040.

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e15040 Background: We investigated factors associated with clinical outcome for liver metastases from colorectal primary tumors treated with Stereotactic Body Radiotherapy (SBRT) from a multi-center, international, prospective patient registry. Methods: A subgroup of patients with colorectal liver metastases treated with SBRT was identified from the RSSearch Patient Registry. Patient, tumor and treatment characteristics associated with outcome were evaluated. Dose fractionations were normalized to BED10. Overall survival (OS) and local control (LC) were evaluated using Kaplan Meier analysis and log-rank test. Results: 217 patients with 233 liver metastases from primary colorectal cancer treated with SBRT between 2005-2017 and enrolled in the RSSearch Patient Registry were included. The median follow-up was 15 months (1–75 months). 77% of patients received prior or concurrent chemotherapy. Median tumor volume was 21.95 cm3 (0.5 – 638 cc), median SBRT dose was 45 Gy (16 – 60 Gy) delivered in a median of 3 fractions (1-5). Median number of liver metastases was 1 (1-8). Median overall survival (OS) was 27 months; median local control (LC) was 41 months. One and two-year OS was 75% and 55%, respectively. One and two-year LC was 75% and 66%, respectively. Higher BED10 was associated with improved LC with median LC of 44 months for BED10 ≥ 100 Gy vs 39 months for BED10 < 100 Gy (p = 0.0007). Higher BED10 was also associated with improved OS: median of 33 months for BED10 ≥ 100 Gy vs to 18 months for BED10 < 100 Gy (p = 0.0009). Smaller tumor volume was associated with improved OS: median OS of tumor volume was 34 months for tumors < 20 cc vs 20 months for tumors ≥ 22cc (p = 0.0037). Local control was not significantly associated with tumor volume: median LC for tumor < 22 cc vs ≥ 22cc was 44 months vs 39 months, respectively (p = 0.193). Age, prior or current chemotherapy and BMI were not associated with OS or LC. Conclusions: In this multi-institutional prospective cohort, OS and LC were favorably correlated with small tumor volume and higher BED10.
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THOMAS, JOHN C., JONATHAN H. ROSS, and ROBERT KAY. "STROMAL TESTIS TUMORS IN CHILDREN: A REPORT FROM THE PREPUBERTAL TESTIS TUMOR REGISTRY." Journal of Urology 166, no. 6 (December 2001): 2338–40. http://dx.doi.org/10.1016/s0022-5347(05)65583-8.

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Harms, Dieter, and Dietmar Schmidt. "Rare tumors in childhood: Pathological aspects. Experience of the Kiel pediatric tumor registry." Medical and Pediatric Oncology 21, no. 4 (1993): 239–48. http://dx.doi.org/10.1002/mpo.2950210402.

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41

Shah, Mashal, Erum Baig, Mohammad Hamza Bajwa, Altaf Ali Laghari, Saad Bin-Anis, Naveed Zaman Akhunzada, Jaleed Gilani, et al. "EPID-23. THE PAKISTAN BRAIN TUMOR EPIDEMIOLOGY STUDY: PAVING THE WAY FOR A NATIONAL BRAIN TUMOR REGISTRY." Neuro-Oncology 23, Supplement_6 (November 2, 2021): vi90—vi91. http://dx.doi.org/10.1093/neuonc/noab196.356.

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Abstract INTRODUCTION In Pakistan, brain tumor epidemiology has been examined in single-centre studies or as part of general cancer registries, which are limited by catchment area, age group, or are not specific to brain tumors. The Pakistan Society of Neuro-Oncology conducted a nationwide study to assess the distribution of brain tumor distribution and associated risk factors. This unfunded study explores data from across Pakistan and serves as a potential model for LMICs to emulate. METHODS A cross-sectional study was designed to include patients diagnosed with brain tumors in major neurosurgical centers in Pakistan retrospectively from January-December 2019. Patients, both alive and deceased, with a radiological diagnosis of a brain tumor were included. Data were recorded on a comprehensive online form from 35 centers, encompassing an estimated 85% of all the brain tumor patients seeking initial treatment by a neurosurgeon from the public and private sectors. Data collection was split into three regions: Sindh and Balochistan; Punjab; and Khyber Pakhtunkhwa and Islamabad. Data collection occurred between August 2020 and January 2021. RESULTS A total of 2750 brain tumor cases were recorded of which 1897 (69%) were diagnosed in the private sector hospitals. MRIs were a more common radiological study compared to CT scans. 2666 surgeries were performed, 174 individuals underwent chemotherapy and 479 underwent radiation therapy; approximately two-thirds of the patients that require adjuvant treatment are not able to receive it. Gliomas were the most common tumor, while pineal tumors were the least common. Findings indicate a low metastasis frequency and few females seeking care. CONCLUSION The study shows that brain tumors are mostly diagnosed and operated on in the private sector; the public sector should be more engaged. The study also highlights that despite inconsistencies in hospital records for brain tumor patients, reliable information can be collected in LMIC settings.
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42

Kruchko, Carol, Haley Gittleman, Jennifer Ruhl, Jim Hofferkamp, Elizabeth M. Ward, Quinn T. Ostrom, Recinda L. Sherman, Sandra F. Jones, Jill S. Barnholtz-Sloan, and Reda J. Wilson. "Cancer collection efforts in the United States provide clinically relevant data on all primary brain and other CNS tumors." Neuro-Oncology Practice 6, no. 5 (July 2, 2019): 330–39. http://dx.doi.org/10.1093/nop/npz029.

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Abstract Cancer surveillance is critical for monitoring the burden of cancer and the progress in cancer control. The accuracy of these data is important for decision makers and others who determine resource allocation for cancer prevention and research. In the United States, cancer registration is conducted according to uniform data standards, which are updated and maintained by the North American Association of Central Cancer Registries. Underlying cancer registration efforts is a firm commitment to ensure that data are accurate, complete, and reflective of current clinical practices. Cancer registries ultimately depend on medical records that are generated for individual patients by clinicians to record newly diagnosed cases. For the cancer registration of brain and other CNS tumors, the Central Brain Tumor Registry of the United States is the self-appointed guardian of these data. In 2017, the Central Brain Tumor Registry of the United States took the initiative to promote the inclusion of molecular markers found in the 2016 WHO Classification of Tumours of the Central Nervous System into information collected by cancer registries. The complexities of executing this latest objective are presented according to the cancer registry standard-setting organizations whose collection practices for CNS tumors are directly affected.
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Al-Agha, Osama M., and Anthony D. Nicastri. "An In-depth Look at Krukenberg Tumor: An Overview." Archives of Pathology & Laboratory Medicine 130, no. 11 (November 1, 2006): 1725–30. http://dx.doi.org/10.5858/2006-130-1725-ailakt.

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Abstract Krukenberg tumor is an uncommon metastatic tumor of the ovary. This article provides an overview of the major pathologic manifestations of Krukenberg tumor, patient characteristics, clinical and laboratory features of the disease, prognostic factors, and current knowledge about its pathogenesis. Pathologists have to be familiar with the diagnostic histopathologic features of the tumor and its principal differential diagnoses. Awareness of the diagnostic manifestations of the tumor leads to the correct diagnosis and prevents tumor misclassification, thus avoiding improper clinical management. The article also addresses the potential clinical utility of serum CA 125 in patients with Krukenberg tumors. Prognosis of Krukenberg tumor is still very poor but our review of the literature reveals several factors that appear to have an impact on survival. There is no established treatment for Krukenberg tumors. A national registry and prospective studies are needed to set a therapeutic approach for Krukenberg tumors in the hope of improving the survival rate.
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44

Ferreira e Silva, Priscilla, Maria Helena Costa Amorim, Eliana Zandonade, and Katia Cirlene Gomes Viana. "Associação entre Variáveis Sociodemográficas e Estadiamento Clínico Avançado das Neoplasias da Mama em Hospital de Referência no Estado do Espírito Santo." Revista Brasileira de Cancerologia 59, no. 3 (September 30, 2013): 361–67. http://dx.doi.org/10.32635/2176-9745.rbc.2013v59n3.501.

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Introdução: O câncer de mama é o segundo tumor de maior incidencia e mortalidade na populacao feminina brasileira. Objetivo: Examinar a associação entre as variáveis sociodemográficas e o estadiamento clínico inicial do tumor maligno de mama em mulheres, a partir do banco de dados de um Registro Hospitalar de Câncer. Método: Realizou-se um estudo analítico de dados secundários de 2.930 registros de casos de neoplasia maligna de mama em mulheres que receberam tratamento entre 2000 e 2006 em um hospital referência em oncologia no Espírito Santo. Após avaliação da completude dos dados, agruparam-se os registros por estadiamento inicial precoce e tardio e, então, aplicados os testes qui-quadrado e de regressão logística para identificação das variáveis com associação estatisticamente significante com a ocorrência do diagnóstico em estadio tardio. Resultados: As variáveis cor da pele e situação conjugal não apresentaram associação estatisticamente significante com a ocorrência do diagnóstico em estádio tardio, entretanto a baixa instrução e a origem do encaminhamento pelo SUS determinaram respectivamente 4,3 e 1,9 vezes mais chances para o diagnóstico em estadiamento tardio. Conclusão: Mulheres com baixo grau de instrução e dependentes do Sistema Único de Saúde tem mais chances de descobrir tumores da mama em estadiamentos tardios.
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Guerrini-Rousseau, Lea, Pauline Hoarau, Gaelle Bougeard, Lisa Golmard, Chrystelle Colas, Marion Gauthier-Villars, Claude Houdayer, Thierry Frebourg, Franck Bourdeaut, and Laurence Brugieres. "EPID-04. PREDCAP, the French registry of predisposition to pediatric cancers." Neuro-Oncology 24, Supplement_1 (June 1, 2022): i47. http://dx.doi.org/10.1093/neuonc/noac079.172.

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Abstract A pathogenic or likely pathogenic variant (PV) in a major cancer predisposition gene is identified in almost 10% of children or young adults who developed a cancer, regardless of their family history. This incidence may increase by the development of wide tumor sequencing programs leading to identify germline PVs in cancer patients and new cancer predisposition syndromes (CPS) associated with childhood cancers. Due to the rarity of each CPS, we still lack information about phenotype associated with most CPS especially cancer risks according to age as well as tumor characteristics and response to treatment. Within the French genetic multidisciplinary network involving pediatric oncologists, oncogeneticists and researchers, we have created a clinico-molecular registry for pediatric-CPS according to data protection regulation. The PREDCAP database collects clinical, genetic and molecular data from patients who developed pediatric tumors associated with a CPS, both retrospectively and prospectively. It includes a mandatory set of data on clinical phenotype, tumor characteristics (including treatment and outcome), family data and results of genetic analyses, with annual data updates. Interoperability with existing databases is planned, allowing for pooling of data collection and management. Aims of PREDCAP registry are to obtain reliable clinical and molecular data on pediatric CPS with a simplified and effective access. By collecting all available data on a large number of patients thanks to international collaborations, we hope to improve the knowledge on rare CPS, in particular, to better define the tumor spectrum and the penetrance of PVs, to analyze the specificity of tumors associated with these germline PVs. With this tool, we wish to facilitate future projects using structured and centralized data, associated with a virtual bank of available tumor and constitutional DNA, to evaluate and improve the relevance of management recommendations established for each syndrome.
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46

Mukherjee, Debraj, Kaisorn L. Chaichana, Ziya L. Gokaslan, Oran Aaronson, Joseph S. Cheng, and Matthew J. McGirt. "Survival of patients with malignant primary osseous spinal neoplasms: results from the Surveillance, Epidemiology, and End Results (SEER) database from 1973 to 2003." Journal of Neurosurgery: Spine 14, no. 2 (February 2011): 143–50. http://dx.doi.org/10.3171/2010.10.spine10189.

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Object Malignant primary osseous spinal neoplasms are aggressive tumors that remain associated with poor outcomes despite aggressive multidisciplinary treatment measures. To date, prognosis for patients with these tumors is based on results from small single-center patient series and controlled trials. Large population-based observational studies are lacking. To assess national trends in histology-specific survival, the authors reviewed patient survival data spanning 30 years (1973–2003) from the Surveillance, Epidemiology, and End Results (SEER) registry, a US population-based cancer registry. Methods The SEER registry was queried to identify cases of histologically confirmed primary spinal chordoma, chondrosarcoma, osteosarcoma, or Ewing sarcoma using coding from the International Classification of Disease for Oncology, Third Edition. Association of survival with histology, metastasis status, tumor site, and year of diagnosis was assessed using Cox proportional-hazards regression analysis. Results A total of 1892 patients were identified with primary osseous spinal neoplasms (414 with chordomas, 579 with chondrosarcomas, 430 with osteosarcomas, and 469 with Ewing sarcomas). Chordomas presented in older patients (60 ± 17 years; p < 0.01) whereas Ewing sarcoma presented in younger patients (19 ± 11 years; p < 0.01) compared with patients with all other tumors. The relative incidence of each tumor type remained similar per decade from 1973 to 2003. African Americans comprised a significantly greater proportion of patients with osteosarcomas than other tumors (9.6% vs 3.5%, respectively; p < 0.01). Compared with the sacrum, the mobile spine was more likely to be the site of tumor location for chordomas than for all other tumors (47% vs 23%, respectively; p < 0.05). Osteosarcoma and Ewing sarcoma were 3 times more likely than chondrosarcoma and chordoma to present with metastasis (31% vs 8%, respectively). Resection was performed more frequently for chordoma (88%) and chondrosarcoma (89%) than for osteosarcoma (61%) and Ewing sarcoma (53%). Overall median survival was histology-specific (osteosarcoma, 11 months; Ewing sarcoma, 26 months; chondrosarcoma, 37 months; chordoma, 50 months) and significantly worse in patients with metastasis at presentation for all tumor types. Survival did not significantly differ as a function of site (mobile spine vs sacrum/pelvis) for any tumor type, but more recent year of diagnosis was associated with improved survival for isolated spinal Ewing sarcoma (hazard ration [HR] 0.95; p = 0.001), chondrosarcoma (HR 0.98; p = 0.009), and chordoma (HR 0.98; p = 0.10), but not osteosarcoma. Conclusions In this analysis of a 30-year, US population-based cancer registry (SEER), the authors provide nationally representative prognosis and survival data for patients with malignant primary spinal osseous neoplasms. Overall patient survival has improved for isolated spine tumors with advancements in care over the past 4 decades. These results may be helpful in providing historical controls for understanding the efficacy of new treatment paradigms, patient education, and guiding level of aggressiveness in treatment strategies.
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47

Syse, Astri, Jon H. Loge, and Torkild H. Lyngstad. "Does Childhood Cancer Affect Parental Divorce Rates? A Population-Based Study." Journal of Clinical Oncology 28, no. 5 (February 10, 2010): 872–77. http://dx.doi.org/10.1200/jco.2009.24.0556.

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Purpose Cancer in children may profoundly affect parents' personal relationships in terms of psychological stress and an increased care burden. This could hypothetically elevate divorce rates. Few studies on divorce occurrence exist, so the effect of childhood cancers on parental divorce rates was explored. Patients and Methods Data on the entire Norwegian married population, age 17 to 69 years, with children age 0 to 20 years in 1974 to 2001 (N = 977,928 couples) were retrieved from the Cancer Registry, the Central Population Register, the Directorate of Taxes, and population censuses. Divorce rates for 4,590 couples who were parenting a child with cancer were compared with those of otherwise similar couples by discrete-time hazard regression models. Results Cancer in a child was not associated with an increased risk of parental divorce overall. An increased divorce rate was observed with Wilms tumor (odds ratio [OR], 1.52) but not with any of the other common childhood cancers. The child's age at diagnosis, time elapsed from diagnosis, and death from cancer did not influence divorce rates significantly. Increased divorce rates were observed for couples in whom the mothers had an education greater than high school level (OR, 1.16); the risk was particularly high shortly after diagnosis, for CNS cancers and Wilms tumors, for couples with children 0 to 9 years of age at diagnosis, and after a child's death. Conclusion This large, registry-based study shows that cancer in children is not associated with an increased parental divorce rate, except with Wilms tumors. Couples in whom the wife is highly educated appear to face increased divorce rates after a child's cancer, and this may warrant additional study.
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48

Ostrom, Quinn T., Gino Cioffi, Kristin Waite, Carol Kruchko, and Jill S. Barnholtz-Sloan. "CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2014–2018." Neuro-Oncology 23, Supplement_3 (October 1, 2021): iii1—iii105. http://dx.doi.org/10.1093/neuonc/noab200.

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Abstract The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control and Prevention (CDC) and National Cancer Institute (NCI), is the largest population-based cancer registry focused exclusively on primary brain and other central nervous system (CNS) tumors in the United States (US) and represents the entire US population. This report contains the most up-to-date population-based data on primary brain tumors available and supersedes all previous reports in terms of completeness and accuracy and is the first CBTRUS Report to provide the distribution of molecular markers for selected brain and CNS tumor histologies. All rates are age-adjusted using the 2000 US standard population and presented per 100,000 population. The average annual age-adjusted incidence rate (AAAIR) of all malignant and non-malignant brain and other CNS tumors was 24.25 (Malignant AAAIR=7.06, Non-malignant AAAIR=17.18). This overall rate was higher in females compared to males (26.95 versus 21.35) and non-Hispanics compared to Hispanics (24.68 versus 22.12). The most commonly occurring malignant brain and other CNS tumor was glioblastoma (14.3% of all tumors and 49.1% of malignant tumors), and the most common non-malignant tumor was meningioma (39.0% of all tumors and 54.5% of non-malignant tumors). Glioblastoma was more common in males, and meningioma was more common in females. In children and adolescents (age 0–19 years), the incidence rate of all primary brain and other CNS tumors was 6.21. An estimated 88,190 new cases of malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US population in 2021 (25,690 malignant and 62,500 non-malignant). There were 83,029 deaths attributed to malignant brain and other CNS tumors between 2014 and 2018. This represents an average annual mortality rate of 4.43 per 100,000 and an average of 16,606 deaths per year. The five-year relative survival rate following diagnosis of a malignant brain and other CNS tumor was 35.6%, for a non-malignant brain and other CNS tumors the five-year relative survival rate was 91.8%.
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Mackintosh, Christopher, Richard Butterfield, Nan Zhang, Bernard Bendok, Richard Zimmerman, Kristin Swanson, Alyx Porter, and Maciej Mrugala. "EPID-24. DOES THE LOCATION MATTER? CHARACTERIZATION OF THE ANATOMIC LOCATIONS, MOLECULAR PROFILES, AND CLINICAL FEATURES OF GLIOMAS." Neuro-Oncology 21, Supplement_6 (November 2019): vi79—vi80. http://dx.doi.org/10.1093/neuonc/noz175.324.

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Abstract INTRODUCTION Locations of gliomas may influence clinical presentations, molecular profiles, treatment options, and prognoses. Using the Mayo Clinic Arizona Cancer Center registry, we analyzed the frequency at which gliomas were identified in different regions of the brain. We evaluated molecular profiles, clinical courses and survival by anatomic location. METHODS Registry was queried to include patients with glioma over a 10-year period. Statistical analyses were used to compare demographic, genetic, and clinical characteristics among patients with gliomas in different locations. RESULTS 182 gliomas were identified. Of the tumors confined to a single lobe, there were 51 frontal (28.0%), 50 temporal (27.5%), 22 parietal (12.1%), and 7 occipital tumors (3.8%) identified. Multifocal disease was noted in 38 patients (20.9%). Tumors affecting temporal lobe were associated with reduced overall survival when compared to all other tumors (11.0 months vs. 13.0 months, log-rank p=0.0068). However, this disparity became insignificant when adjusted for tumor grade, age, and surgical approach [HR(95% CI) 1.26(0.87, 1.82), p=0.212]. Out of 82 cases tested for IDH-1, 10 were mutated (5.5%). IDH-1 mutation was present in 6 frontal, 2 temporal, 1 thalamic, and 1 multifocal tumor. Out of 21 cases tested for 1p19q deletions, 12 were co-deleted, 9 of which were frontal lobe tumors. MGMT methylation was assessed in 45 cases; 7 of 14 frontal tumors and 6 of 13 temporal tumors were methylated. ATRX loss was detected in 2/42 assessed cases. CONCLUSION Our results support the hypothesis that the anatomical locations of gliomas influence patients’ clinical courses. Tumors involving the temporal lobe were associated with poorer survival, though this association appeared to be driven by these patients’ more aggressive tumor profiles and higher risk baseline demographics. Molecular analysis was limited by low prevalence of genetic testing in the study sample, highlighting the importance of capturing this information for all gliomas.
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Kurdi, Maher, Nadeem Shafique Butt, Saleh Baeesa, Badrah Alghamdi, Yazid Maghrabi, Anas Bardeesi, Rothaina Saeedi, and Ahmed I. Lary. "Epidemiological distribution of primary central nervous system tumors in the Western Province of Saudi Arabia: a local registry from neuroscience-affiliated centers." Epidemiology and Health 43 (May 23, 2021): e2021037. http://dx.doi.org/10.4178/epih.e2021037.

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OBJECTIVES: Central nervous system (CNS) tumors are a major and growing global healthcare challenge. Western Saudi Arabia has an inconsistent data registry; therefore, the epidemiology of CNS tumors is unclear across the country. This study is aimed to assemble the epidemiological matrix of CNS tumors in the Western Province of Saudi Arabia.METHODS: A retrospective analysis was performed using clinical data obtained from 3 neuroscience centers in Western Saudi Arabia in the period 2014-2019. The sample size included 663 adult and pediatric cases from the local and expatriate populations diagnosed with CNS tumors. The distributions of age, sex, clinical presentation, tumor location, type of surgery, histological subtype, genetic characteristics, and recurrence rate were explored.RESULTS: The analysis included 500 adult cases and 163 pediatric cases up to 18 years of age with a male-to-female ratio of 1.16. The mean age at diagnosis was 38.0±22.6 years. The supratentorium was the most common location (n=515, 77.7%). Most patients presented with headache (n=298, 44.9%), followed by a focal neurological deficit (19.9%). The most common primary CNS tumor was glioblastoma (n=234, 35.3%), followed by meningioma (n=100, 15.1%). The recurrence rate after surgery was estimated to be 40.9% among all CNS tumors.CONCLUSIONS: This is the first tumor registry of Western Province of Saudi Arabia that describes the distribution of primary CNS tumors and highlights their epidemiological matrix. Several incidence trends in terms of histological type, age group, sex, location, and recurrence were determined, and some genetic characteristics were recognized.
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