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1
Stenson, Camilla. "Cognitive deficits in spina bifida". Thesis, Högskolan i Skövde, Institutionen för biovetenskap, 2015. http://urn.kb.se/resolve?urn=urn:nbn:se:his:diva-11500.
Testo completoAbstract (sommario):
Spina bifida myelomeningocele (SBM) is the most common and severe type of spina bifida which is a neural tube defect (NTD). Additionally to the defect of the spinal cord most cases of SBM develop an Arnold-Chiari-II malformation, which is the main reason behind the common development of hydrocephalus. Children with SBM have a rather different cognitive profile than typically developing children. Hence, this thesis reviews the neurological impact on the cognitive profile and its relation to the social impairments found for this population. The Arnold-Chiari-II malformation is a malformation of the hindbrain which affects structures of the hindbrain, midbrain, ventricular system and subcortical gray matter. These deficits lead to impairments in the cognitive domains of executive functioning, visual-spatial working memory, intelligence, language, and learning. The consequences of these cognitive deficits are often on the social aspects of life. Two aspects affected are education and work, projecting in less academic success and a higher rate of unemployment. By clarifying the relationship between all of these aspects there is hope to improve the life of these individuals, especially on an educational basis.
2
Radke, Roswitha. "Lebensbilder von Menschen mit Spina bifida /". Hamburg : Kovač, 2009. http://d-nb.info/992158591/04.
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3
Hammond, Jacqueline. "Children's understanding and experience of spina bifida". Thesis, University of East London, 1999. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.532438.
Testo completoAbstract (sommario):
This thesis reports a study which explored children's understanding and experience of spina bifida. Semi-structured interviews were conducted with 8 children aged 8-11 years with spina bifida. A grounded theory approach was used to develop 'theories' from the data. Analysis of the data suggest that all participants were aware of 'being different' from their "normal" able-bodied siblings and peers and that many identified themselves in terms of having spina bifida; they spoke about being picked on, teased and about other types of bullying; and all of them disliked their physical appearance. Several ways of coping with spina bifid a were also talked about by the children. Knowledge about spina bifida tended to be functional and obtained from parents; most of the participants reported that little information about treatment was given by medical professionals which seemed to contribute to anxiety regarding treatment and hospitalization. The implications of the findings for clinical practice and further research are considered.
4
Gaston, Hannah. "Ophthalmic complications of spina bifida and hydrocephalus". Thesis, University of Southampton, 1986. https://eprints.soton.ac.uk/209759/.
Testo completoAbstract (sommario):
This thesis represents an attempt to further our knowledge of the ophthalmic complications of spina bifida and hydrocephalus by means of literature review and a long term clinical study, and to determine whether regular ophthalmic supervision can assist in the general management of affected children. The ophthalmic complications of spina bifida have often been reported in the literature and thought to merit regular supervision of affected children, yet few centres currently offer this service. In this study 322 children attending one regional centre were examined repeatedly over a six year period by one ophthalmologist. Ophthalmic complications were found to be very common. They frequently provided evidence of raised intracranial pressure due to shunt dysfunction even when other objective evidence was lacking. Every spina bifida and hydrocephalus clinic should have an ophthalmalogist in its medical team. Preservation of visual function and early diagnosis of raised intracranial pressure in these children should result from this arrangement.
5
Smuts, Elaine. "'n Narratiewe lewensgeskiedenis oor die manifestasie van bates by 'n kleuter met spina bifida mielomeningoseel". Pretoria : [s.n.], 2004. http://upetd.up.ac.za/thesis/available/etd-03152005-115827.
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6
Wood, David L., Brandon Rocque, Betsy Hopson, Katherine Barnes e Kiana Johnson. "Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) Module predicts clinical outcomes among youth and young adults with Spina Bifida". Digital Commons @ East Tennessee State University, 2019. https://doi.org/10.3233/PRM-180595.
Testo completoAbstract (sommario):
PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida.
METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR).
RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown.
CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.
7
Hunt, Gillian Mary. "Forty years of research on open spina bifida". Thesis, University of Cambridge, 2012. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.609968.
Testo completo
8
Valland, Marianne. "Befragung zur Lebenssituation von Patienten mit Spina bifida /". Köln, 2008. http://opac.nebis.ch/cgi-bin/showAbstract.pl?sys=000253958.
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9
Pearson, Althea Mary. "The self concept of adolescents with spina bifida". Thesis, University College London (University of London), 1985. http://discovery.ucl.ac.uk/10020161/.
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10
Banda, Faith. "Physiotherapy management of spina bifida in Lusaka, Zambia". University of the Western Cape, 2016. http://hdl.handle.net/11394/5073.
Testo completoAbstract (sommario):
Magister Artium - MABackground: Spina Bifida (SB) is one of the leading causes of disability in children globally. Its management in Sub-Saharan countries is quite challenging and has shown to be an expensive public health problem. A recent study on SB has shown that physiotherapy is poorly utilised in Zambia. Although it is very cardinal in the rehabilitation of children right from birth, very little is known on the role of physiotherapy in the management of children with SB. Aim: To investigate the role of physiotherapy in the management of SB patients both at the University Teaching Hospital (UTH) and Beit Cure International Hospital (BCIH) during the period: January 2010 to December 2014. Study design: A sequential explanatory mixed study design was used for this study. An adapted validated data extraction form was used to capture quantitative data from hospital records, while an interview guide was used in in-depth interviews and Focus Group Discussion (FGDs) with specialist physiotherapists. Data analysis: Quantitative data was analysed using SPSS version 23 and descriptive statistics represented on graphs, charts and tables in form of percentages and frequency distributions. Qualitative data was audiotaped during the focus group discussion and in-depth interviews, transcribed verbatim and thematic analysis was used. Results: A total number of 207 children with SB were managed during the period under review at the two hospitals with the most prevalent type of SB being myelomeningocele and hydrocephalus at 69.4%, commonly located in the lumbar region 53.3%, prone in female patients 55.6%. A total of 38% had an increased tone while 2% had low tone indicating the need for physiotherapy. Through purposive sampling, a total of eight physiotherapists took part in the qualitative study. Results showed that there are poor referral systems for physiotherapy at the two hospitals making follow up quite difficult at times. Information on physiotherapy sessions was not included in patient files but only indicated in the physiotherapy departmental registers. Some physiotherapists felt that their role in the rehabilitation process was not known amongst team members such as surgeons. However, the availability of assistive devices at the hospitals helped provide better services which in turn promoted improvement in patients and also contributed to motivation. Conclusion: Having undergone some training as rehabilitation team members, all the physiotherapists noted that training helped to empower them, gain experience and changed attitudes of some rehabilitation team towards them. It is therefore recommended that the referral system and documentation be improved upon in order to effectively work together as a rehabilitation team with common goals.
11
VERMOREL, PHILIPPE. "Vivre avec un spina : auto-observation". Lyon 1, 1990. http://www.theses.fr/1990LYO1M351.
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12
Thibadeau, Judy, Matthew R. Reeder, Jennifer Andrews, Katherine Ong, Marcia L. Feldkamp, Sydney Rice e Ann Alriksson-Schmidt. "Understanding the Natural Progression of Spina Bifida: Prospective Study". JMIR PUBLICATIONS, INC, 2017. http://hdl.handle.net/10150/626441.
Testo completoAbstract (sommario):
Background: Spina bifida (SB) is monitored through birth defects surveillance across the United States and in most developed countries. Although much is known about the management of SB and its many comorbid conditions in affected individuals, there are few systematic, longitudinal studies on population-based cohorts of children or adults. The natural history of SB across the life course of persons with this condition is not well documented. Earlier identification of comorbidities and secondary conditions could allow for earlier intervention that might enhance the developmental trajectory for children with SB. Objective: The purpose of this project was to assess the development, health, and condition progression by prospectively studying children who were born with SB in Arizona and Utah. In addition, the methodology used to collect the data would be evaluated and revised as appropriate. Methods: Parents of children with SB aged 3-6 years were eligible to participate in the study, in English or Spanish. The actual recruitment process was closely documented. Data on medical history were collected from medical records; family functioning, child behaviors, self-care, mobility and functioning, and health and well-being from parent reports; and neuropsychological data from testing of the child. Results: In total, 152 individuals with SB were identified as eligible and their parents were contacted by site personnel for enrollment in the study. Of those, 45 (29.6%) declined to participate and 6 (3.9%) consented but did not follow through. Among 101 parents willing to participate, 81 (80.2%) completed the full protocol and 20 (19.8%) completed the partial protocol. Utah enrolled 72.3% (73/101) of participants, predominately non-Hispanic (60/73, 82%) and male (47/73, 64%). Arizona enrolled 56% (28/50) of participants they had permission to contact, predominately Hispanic (18/28, 64%) and male (16/28, 57%). Conclusions: We observed variance by site for recruitment, due to differences in identification and ascertainment of eligible cases and the required institutional review board processes. Restriction in recruitment and the proportion of minorities likely impacted participation rates in Arizona more than Utah.
13
Lemelle, Jean-Louis. "Spina bifida, continence et qualité de vie : étude multicentrique". Nancy 1, 2006. http://www.theses.fr/2006NAN11313.
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14
Paal, Andrea M. "Parents' Informational Needs Following Prenatal Diagnosis of Spina Bifida". University of Cincinnati / OhioLINK, 2010. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1276976280.
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15
PEACH, ELIZABETH ELAINE. "MATERNAL PSYCHOLOGICAL BENEFIT OF PRENATAL REPAIR FOR SPINA BIFIDA". University of Cincinnati / OhioLINK, 2001. http://rave.ohiolink.edu/etdc/view?acc_num=ucin996076806.
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16
Halliday, Melissa Ann. "Narrative Skills in Children with Spina Bifida and Hydrocephalus". Diss., CLICK HERE for online access, 2007. http://contentdm.lib.byu.edu/ETD/image/etd1943.pdf.
Testo completo
17
Sullivan, Regina. "The Relationship between Ventriculoperitoneal Shunts and Shunt Revisions versus Visual Complaints among Patients with Spina Bifida in the Arkansas Spina Bifida Research Project". Digital Archive @ GSU, 2012. http://digitalarchive.gsu.edu/iph_theses/231.
Testo completoAbstract (sommario):
Many patients with Spina Bifida suffer from hydrocephalus as a complication of their developmental disability and surgeons commonly treat this condition with ventriculoperitoneal shunts. Surgeons have speculated for years that these shunts may cause some type of visual disturbance because of their close proximity to the visual pathways in the brain. Little research has been done, however, to support or discourage this commonly held belief. Questions and data from the Arkansas Spina Bifida Research Project were used to examine whether ventriculoperitoneal (VP) shunts and VP shunt revisions increase reports of visual complaints for the individuals participating in this research project. This cross sectional design used responses to the vision questions from the 2005 Arkansas Spina Bifida Questionnaire. Results showed a 333% increase in reported vision complaints after receiving a VP shunt, but no significance with the increase in vision complaints for those having three or more VP shunt revisions. Females were 50% to 60% less likely to report vision complaints in both multivariate linear logistic models. While these results indicate the potential relationship between VP shunts and vision concerns, they must be viewed cautiously in light of study limitations due to the small sample size, selection bias, and study design.
18
Patterson, Victoria Louise. "Characterisation of hitchhiker, a novel mouse mutant with spina bifida". Thesis, University of Oxford, 2011. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.560907.
Testo completoAbstract (sommario):
Neural tube defects are a set of developmental malformations which can be highly debilitating, with limited treatment available. Mouse mutants exhibiting neural tube defects are studied to identify processes promoting proper neural tube closure, and potential points of intervention for future therapies. This thesis characterises the mouse mutant hitchhiker (hhkr), a hypomorphic allele of Tulp3 which presents with neural tube defects and polydactyly. The spina bifida and exencephaly observed in hhkr mutants are demonstrated to be consequences of failure of neural tube closure, and excessive proliferation is identified in the hindbrain neuroepithelium of mutant embryos. Intriguingly, increases apoptosis was reported for the Tulp3tmlJng mutant (lkeda et aI., 2001), and this increase is not conserved in Tulp3hhkr. Further support is provided for the role of Tulp3 as a negative regulator of Sonic hedgehog (Shh) signalling, confirming such a role in the limb, while preliminary data from genetic interaction studies between hhkr and Tectonic-/- are presented to suggest Tulp3 may exert a positive influence on Shh signalling in cranial regions. The molecular function of the Tulp3 protein is investigated, revealing an interaction between Tulp3 and Alx1, a transcription factor involved in skeletal patterning. An interaction between Tulp3 and Trim71, an E3 ubiquitin ligase is also demonstrated and supported by the eo- localisation of the proteins in transfected cells. Tulp3 is shown to be ubiquitinated in vivo, although this modification does not appear to be dependent on Trim7!. This thesis provides evidence that Tulp3 is likely to be involved in diverse protein-protein interactions around the cell, and some of these interactions may be crucial in promoting the proper closure of the neural tube.
19
Awwad, Fuad A. A. "External imprecise covariates in an epidemiological study of environmental lead and neural tube defects". Thesis, Lancaster University, 1998. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.286981.
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20
BISMUTH, ALINE. "La prise en charge globale du spina bifida : a propos de 20 observations". Aix-Marseille 2, 1988. http://www.theses.fr/1988AIX20083.
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21
Radke, Roswitha. "Lebensbilder von Menschen mit Spina bifida, offenem Rücken "Ich hatte ja bisher kein langweiliges Leben"". Hamburg Kovač, 2008. http://d-nb.info/992158591/04.
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22
Wai, Eugene Kenneth. "The relationship between spinal deformity and physical disability in children with spina bifida and scoliosis". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1999. http://www.collectionscanada.ca/obj/s4/f2/dsk1/tape8/PQDD_0005/MQ45922.pdf.
Testo completo
23
Moorcroft, Preston Fenner. "The orthopaedic management of spina bifida cystica : the Cape Town experience". Master's thesis, University of Cape Town, 1985. http://hdl.handle.net/11427/26273.
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24
Bremer, Sophia Alice. "Prävalenz von Gastroschisis, Omphalozele, Spina bifida und orofazialen Spaltbildungen bei Neugeborenen im Zeitraum Januar 2000 bis Dezember 2010 in Leipzig, Sachsen, Sachsen-Anhalt und Deutschland". Doctoral thesis, Universitätsbibliothek Leipzig, 2017. http://nbn-resolving.de/urn:nbn:de:bsz:15-qucosa-219767.
Testo completoAbstract (sommario):
Hintergrund: Zahlreiche Studien beschreiben
weltweit eine Zunahme angeborener Fehlbildungen.
Diese sind in Deutschland die häufigste
Todesursache im frühen Kindesalter. Die hier
vorliegende Studie untersuchte lokale und nationale
Trends der Prävalenz von Gastroschisis,
Omphalozele, Spina bifida und orofazialen Spaltbildungen
von 2000 bis 2010.
Methoden: Die Prävalenz der 4 Fehlbildungen
wurde im Zeitraum Januar 2000–Dezember 2010
mithilfe von 4 Datenquellen aus Leipzig, Sachsen,
Sachsen-Anhalt und Deutschland untersucht.
Ergebnisse: Die Prävalenz der Fehlbildungen
betrug im Untersuchungszeitraum in Deutschland
bzw. in Sachsen 1,97/2,12 (Gastroschisis),
1,63/1,48 (Omphalozele), 5,80/8,11 (orofaziale
Spaltbildungen) und 2,92/2,50 (Spina bifida) je
10 000 Lebendgeborene. In Sachsen zeigte sich
ein Trendanstieg, dessen Effektstärken jedoch
sehr gering sind (OR/Jahr zwischen 1,01–1,09).
Auch in Deutschland insgesamt wurde eine signifikante
Zunahme der Fehlbildungen beobachtet
(OR/Jahr zwischen 1,01–1,04), ausgenommen
davon war die Lebendgeborenenprävalenz der
Spina bifida, die abzunehmen schien (OR/Jahr
0,986 (0,97–1,0), p-korrigiert = 0,04).
Schlussfolgerung: Ob ein tatsächlicher Anstieg
der Prävalenzen besteht oder lediglich Artefakte
einen Anstieg vortäuschen, ist unklar. Änderungen
in der Erfassungs- und Verschlüsselungspraxis,
Fehlcodierungen, Doppel- und/oder lückenhafte
Erfassung der Fehlbildungen könnten die
Daten verfälschen. Da nur in Sachsen-Anhalt und
Rheinland-Pfalz das Auftreten von Fehlbildungen
prospektiv erfasst wird, könnten im Übrigen
auch nur in diesen Bundesländern zeitnah Veränderungen
der Fehlbildungsprävalenz erkannt
werden. Angesichts der anscheinenden oder
scheinbaren Zunahme von Fehlbildungen und
der offensichtlich fehlerhaften Datenlage ist ein berücksichbundesweites
oder sind weitere regionale Register für eine bessere
und zeitnahe Erkennung und Erfassung von Fehlbildungen
in Deutschland notwendig.
25
LEMIERE, CATHERINE. "Sensibilisation au latex et aux myorelaxants : prevalence dans des populations normales et a risque". Aix-Marseille 2, 1994. http://www.theses.fr/1994AIX20805.
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26
Guigou, Anne. "Constipation et incontinence anale chez le spina bifida : a propos de 79 cas". Lyon 1, 1988. http://www.theses.fr/1988LYO1M212.
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27
Burns, Joanna L. (Joanna Lynn Brannan). "The Psychological Effects of a Therapeutic Camping Experience on First Time Campers with Spina Bifida". Thesis, University of North Texas, 1994. https://digital.library.unt.edu/ark:/67531/metadc279081/.
Testo completoAbstract (sommario):
Camping has been identified as a resource for educational, therapeutic, and recreational growth. The purpose of this study was to determine the psychosocial effects of a therapeutic camping experience with first time campers with spina bifida. In this study with four first time campers with spina bifida, three areas related to the camp experience were observed and measured: recreation participation, fun/pleasure, and self esteem. Both qualitative and quantitative methods were used, including the Coopersmith Self Esteem Inventory, the Recreation Participation and Fun Inventory, participant and non-participant observations, interviews, and a counselor questionnaire. The measurements of self esteem, recreation participation, and fun/pleasure were taken at three intervals, before camp, during camp and three weeks following the camp experience. The four camper case studies demonstrated that each camper experienced his/her own unique first time camp experiences.
28
Bowles, Wendy Lyn School of Social Work UNSW. "Quality of life of adults with spina bifida: an issue of equality". Awarded by:University of New South Wales. School of Social Work, 1996. http://handle.unsw.edu.au/1959.4/17619.
Testo completoAbstract (sommario):
This thesis explores the quality of life of the first generation of people with spina bifida to reach adulthood. The inquiry was conducted from the social/political approach to disability. From this perspective, disability is viewed as a matter of equality because the problems associated with having a disability are caused by barriers within the social environment. This human rights-based approach underlies much current Australian legislation and government disability policy. The research question was: do adults with spina bifida in New South Wales have the same quality of life as other adults in New South Wales? Quality of life was examined using a framework incorporating objective and subjective measures of quality of life, and the relationship between them, in thirteen domains of life. The role played by values was also explored. Qualitative and quantitative data were collected. Results from structured interviews with a stratified random sample of 117 adults with spina bifida were compared with the results of postal surveys from 180 Technical and Further Education students. 1991 Census data was also used for comparison. People with spina bifida were found to be disadvantaged in every area of life studied, being in the lowest categories of quality of life: 'adaptation' or 'reluctant adaptation' for nearly all domains. In this situation the spina bifida group had significantly lower objective life conditions than the comparison group, yet were as satisfied or more so, with these circumstances, having adapted their expectations downwards. Qualitative results revealed that people with spina bifida suffered high levels of discrimination, social exclusion and isolation. They wanted jobs, leisure opportunities, relationships and to form their own families. Having little hope of attaining these, however, they had become resigned to their disadvantaged situations. It is concluded that there is a large gap between current Australian disability policy rhetoric about rights and equity, and the reality for people with disabilities. It is also demonstrated that measurements of quality of life which take into account both objective and subjective indicators and the relationship between them, are vital for service planning and evaluation. Implications for future research, policy and practice conclude the thesis.
29
Yang, Xiu-Ming. "Ultrastructure and histology of pre-spina bifida in the splotch-delayed mouse". Thesis, McGill University, 1988. http://digitool.Library.McGill.CA:80/R/?func=dbin-jump-full&object_id=61764.
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30
Murray, Rosemary Amanda. "Pregnant women's decisions about prenatal screening for Down's Syndrome and spina bifida". Thesis, University of Sussex, 2002. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.393209.
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31
Peyronnet, Benoit. "Evaluation multimodale du régime de pression vésicale chez les patients spina bifida". Thesis, Rennes 1, 2019. http://www.theses.fr/2019REN1B031.
Testo completoAbstract (sommario):
Objectifs : Décrire les spécificités des troubles vésico-sphinctériens des patients spina bifida, leur impact sur la mortalité et l’intérêt d’outils diagnostiques alternatifs à l’urodynamique pour l’évaluation du régime de pression vésicale dans cette population. Méthodes : une cohorte prospective a été utilisée pour décrire les troubles vésico-sphinctériens des patients spina bifida et une étude épidémiologique nationale sur la base PMSI a été effectuée pour évaluer l’implication des causes urologiques sur la mortalité de cette population. Une étude prospective a été menée pour évaluer le rôle des marqueurs urinaires et de la radiomique dans l’évaluation du régime de pression vésicale chez les patients spina bifida. Résultats: Les troubles vésico-sphinctériens se caractérisent par la forte prévalence de troubles de la compliance et haut régime de pression vésicale. Les pathologies urologiques sont ainsi la première cause de mortalité des patients spina bifida en France. Le TIMP 2 et le MMP-2 urinaire ont associés à l’hypocompliance vésicale et le TIMP 2 urinaire a des performances diagnostiques légèrement supérieure aux paramètres urodynamiques pour l’atteinte du haut appareil urinaire. Le profil des marqueurs urinaires em cas d’hyperactivité détrusorienne diffèrent entre les spina bifida et les autres pathologies neurologiques en particulier pour les marqueurs de remodelage de la matrice extracellulaire tel le TGFβ-1. La radiomique, en particulier l’analyse de texture scanner est associé à certains paramètres urodynamiques et pourrait permettre l’évaluation du régime de pression vésicale chez les patients spina bifida. Conclusion: Les patients spina bifida présentent des troubles vésico-sphinctériens singuliers et sévères dont le remodelage de la matrice extracellulaire semble être un déterminant physiopathologique important. Un évaluation multimodale du régime de pression vésicale incluant les biomarqueurs urinaires et la radiomique pourrait permettre d’optimiser la prise en chargeAims : To describe neurognenic lower urinary tract dysfunctions (NLUTD) in spina bifida patients, their impact on mortality and the role of alternatives to urodynamics in evaluating NLUTD in this patients’ population. Methods: A prospective cohort was used to describe NLUTD in spina bifida patients and a nationwide epidemiological study was performed to assess the proportion of urological causes in the overall mortality of this population. A prospective study was conducted to evaluate the role of urinary biomarkers and radiomics in the assessement of bladder pressure in spina bifida patients. Results: There is a high prevalence of low bladder compliance and high bladder pressure in spina bifida patients. Urological disorders are the leading cause of death in spina bifida patients in France nowadays. Urinary levels of TIMP-2 and MMP-2 are associated with low compliance bladder and urinary TIMP-2 has diagnostic performances slightly superior to urodynamics for upper urinary tract damage. Markers of extracellular matrix remodeling such as TGFβ-1 differ between spina bifida and other neurological conditions in case of NDO. Radiomics, especially CT texture parameters is associated with several urodynamic parameters and might help to evaluate bladder pressures in spina bifida patients. Conclusion: Spina bifida NLUTD are singular and severe, with strong implication of extracellular matrix remodeling. Multimodal evaluation of spina bifida NLUTD including urinary biomarkers and radiomics might help to optimize the management of these patients
32
Scriven, Elizabeth H. "DISCOVERING THEMES: DISABILITY IDENTITYDEVELOPMENT AS IT PERTAINS TO PEOPLEBORN WITH SPINA BIFIDA". Antioch University / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=antioch1559730463371335.
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33
DESFONTAINES, GRUJCIC VERONIQUE. "Syndrome de moelle fixee dans le cadre des myelomeningoceles : etude de 9 cas". Lille 2, 1993. http://www.theses.fr/1993LIL2M172.
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34
Brochard, Charlène. "Le Spina Bifida et dysfonction anorectale : de la clinique à la dysfonction neuroépithéliale". Thesis, Rennes 1, 2018. http://www.theses.fr/2018REN1B029.
Testo completoAbstract (sommario):
Le Spina Bifida est une maladie congénitale rare due à anomalie de fermeture du tube neural ayant des conséquences physiques et fonctionnelles multiples. La prise en charge des séquelles digestives du Spina Bifida ne fait l’objet d’aucun consensus national ou international. Les objectifs de cette thèse translationnelle étaient de caractériser les plaintes anorectales des patients adultes ayant un Spina Bifida, d’en préciser les mécanismes physiopathologiques sous-jacents à partir des données de la manométrie anorectale et du barostat rectal et en étudiant les fonctions de la barrière épithéliale intestinale. Les plaintes anorectales des patients adultes ayant un Spina Bifida représentent leur deuxième plainte en terme de fréquence et sont l’incontinence fécale, et la constipation. Ces troubles peuvent évoluer au cours du temps ce qui justifie un suivi digestif au long cours. Le niveau lésionnel neurologique n’est ni associé aux troubles digestifs ni à à leur évolution. Les patients ayant un Spina Bifida ont une atteintede la fonction anale (défaut de contraction) et des fonctions rectales (diminution du tonus et de la compliance rectale). Ils ont également une hyperperméabilité paracellulaire et une diminution de la densité du tissu conjonctif; ces 2 anomalies étant corrélées entre elles. L’augmentation de la perméabilité paracellulaire était négativement corrélée avec la compliance rectale. Enfin, les patients ayant un Spina Bifida ont une augmentation de l’expression de TGFBeta1. Les anomalies des fonctions anorectales et de la barrière épithéliale intestinale pourraient être des cibles thérapeutiques potentielles dans la prise en charge des troubles anorectaux des patients adultes ayant un Spina BifidaSpina Bifida is a rare congenital disorder caused by an abnormal neural tube closure with multiple physical and functional consequences. The management of the digestive disorders of Spina Bifida is not consensual. The objectives of this present work were to characterize the anorectal complaints of adult patients with Spina Bifida, to specify the underlying pathophysiological mechanisms from the data of anorectal manometry and rectal barostat and to study the functions of the intestinal epithelial barrier. The anorectal complaints of adult patients with Spina Bifida represent their second complaint and are faecal incontinence and constipation. These disorders can change over time which justifies long-term digestive follow-up. The level of neurological lesion is neither associated with digestive disorders nor with their evolution. Patients with Spina Bifida have impaired anal function (lack of contraction) and rectal function (decreased tone and rectal compliance). They also have paracellular hyperpermeability and decreased connective tissue density ; these 2 anomalies are interrelated. The increase in paracellular permeability was negatively correlated with rectal compliance. Finally, patients with Spina Bifida have an increased expression of TGFBeta1. Abnormalities of anorectal function and intestinal epithelial barrier may be potential therapeutic targets in the management of anorectal disorders in adult patients with Spina Bifida
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Duffy, Catherine M. "The energy cost of walking in spina bifida : when does it become unacceptable?" Thesis, Queen's University Belfast, 1998. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.263320.
Testo completo
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Simms, Barbara Ann. "The learner driver with spina bifida and hydrocephalus : can driving ability be predicted?" Thesis, University College London (University of London), 1991. http://discovery.ucl.ac.uk/10018599/.
Testo completoAbstract (sommario):
The focus of this thesis is on the possible effects of cognitive deficit on the acquisition of driving skills in young people with spina bifida and hydrocephalus (SBH). The specific question addressed is whether success on the standard Driving Test can be predicted from performance on a battery of psychometric tests. A review of the findings from studies on cognitive deficit and driving and the cognitive functioning of groups with SBH identified the areas of visual-perceptual skill, attention and memory as being of possible relevance in the assessment of suitability for driving. The second part of the thesis describes the development of a battery of tests to assess not only these skills, but also visual-motor ability, which, from results during the early stages was also thought to be of value in the assessment of skills for driving. During development of the battery, the perceptual-cognitive tests chosen were completed by two series of SBH adults and by four matched groups of varying ability (able-bodied, SBH, SB only and cerebral palsy). As the work progressed, it became clear that the prediction of driving success from cognitive tests was limited. However, the results of these studies and a small-scale study of 14 learner drivers during early tuition, highlighted efficient visual disembedding and memory skills as important for learning to drive. Of additional importance was the consistent finding that the reasons why a person did not become a driver had many causes, not necessarily related to cognitive functioning. In particular, financial circumstances, the availability of adapted cars and driving instructor techniques were often overiding factors in determining whether a person reached Driving Test standard or not. No definitive answer, therefore, can be given to the specific question addressed in this thesis - can driving ability be predicted? It is clearly indicated, however, that although sound perceptual-cognitive skills are a prerequisite for learning to drive, they are not alone sufficient to predict driving success.
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McCabe, Erin. "Influence of Physically Active Leisure Participation on Obesity in Youth with Spina Bifida". Thesis, University of North Texas, 2004. https://digital.library.unt.edu/ark:/67531/metadc4690/.
Testo completoAbstract (sommario):
Childhood obesity and resulting secondary complications in youth with disabilities are occurring in epidemic proportions, due in part to a trend of physical inactivity. The purpose of this study is to report the prevalence of overweight, the leisure time activity patterns, and the association between frequency of physically active leisure participation and body mass index for age, in a sample of 50 youth with spina bifida, ages 4.5 to 17.9 years. Results indicate that 52% of the sample are classified as at risk of overweight or overweight; 36% were male and 16% were female. The top five leisure time activities and team sport participation are identified. Subjects who did not use a wheelchair for ambulation participated significantly more in physically active leisure than subjects who used a wheelchair. Future research and rationale for physically active leisure as an intervention for youth with spina bifida are discussed.
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Cappelli, Mario Carleton University Dissertation Psychology. "Marital interaction of couples with children with Spina Bifida : a case-control study". Ottawa, 1990.
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Di, Donato Josephine J. "Factors influencing the health-related quality of life of children with spina bifida". Thesis, Queensland University of Technology, 2001. https://eprints.qut.edu.au/36779/1/36779_Digitised%20Thesis.pdf.
Testo completoAbstract (sommario):
Health-related quality of life is emerging as an important area of health research as disease-oriented descriptions of health give way to positive concepts. The health-related quality of life of children with spina bifida is often described in terms of the nature and severity of their medical condition. In this thesis it was hypothesised that factors other than their medical condition influences health-related outcomes. In fact, the dependency on medical care services to monitor and manage their condition throughout childhood and beyond was identified as a potential determinant of healthrelated quality of life. The aims of the research were to describe the healthrelated quality of life of children with spina bifida and characterise the impact of utilisation and experience with medical care services on reports of health-related quality of life.
The research was conducted in two parts. Part A addressed issues related to the measurement of quality of life in child populations and specifically examined the psychometric properties of the main quality of life instrument (the Child Health Questionnaire - CHQ) in a sample of children with spina bifida. It was found that tests were consistent with other studies of similarly chronic conditions and on this basis the CHQ could be used reliably and validly in a sample of children with spina bifida.
Part B consisted of three studies designed to examine possible determinants of health-related quality of life in children with spina bifida. In Study One, 115 parent respondents participated in a mail questionnaire to obtain a baseline measure of quality of life in children with spina bifida. In this study clinical and sociodemographic characteristics were examined. The major findings were: the health-related quality of life of children with spina bifida was generally the poorest when compared to reports of other groups of children; aspects of physical health were more likely to be associated with clinical factors; and age differences were observed when psychosocial aspects of health were examined. In Study Two, relationships between functional independence, satisfaction with and utilisation of medical services on reports of health-related quality of life were examined. The data collection methods included an initial face-to-face interview during scheduled clinic appointments to obtain data about functional independence and satisfaction with care. This was then followed by a phone interview within a few days of the visit to obtain a report of health-related quality of life. A sample of 71 families and data related to eighty-six episodes of care contributed to the data collection for this stage of the research. The key findings were: Firstly, severity influenced the physical functioning aspect of health-related quality of life outcomes only and in this study the findings did not suggest that severity was an important determinant of functioning at a psychosocial level. Secondly, it was expected that greater functional independence would translate into higher mean quality of life scores (i.e. better quality of life) across both physical and psychosocial domains. However, the summary measure of functional independence did not appear to be as influential as the measures related to service utilisation and patient satisfaction when one inspects the size of the regression coefficient in these relationships. Thirdly, relationships between health-related quality of life and use of hospital-based services and satisfaction with these services suggest that it is important to distinguish between different types of services and different aspects of satisfaction, as the results in this study suggest they have a differential effect on quality of life. Finally, in terms of the factors that were found to be determinants of specific quality of life domains, the findings in this study seem to reflect a biopsychosocial rather than a biomedical perspective on health. That is, factors other than the medical severity of spina bifida appeared to explain differences in quality of life and it was the psychosocial aspects rather than physical functioning aspects that were primarily affected.
In Study Three, the health-related quality of life of participants from Study One was re-assessed after fifteen months. It was found that changes in health reaching statistical significance were physical functioning, behaviour and mental health. Utilisation of medical services did not appear to influence change in quality of life scores (except for visits to the Accident and Emergency Department and radiological investigations on the mental health score). However these findings should not be discounted altogether as clinically, any change may have utility in assessing the impact of particular methods of treatment/rehabilitation. While medical care services make an important contribution to improving the health status of children with spina bifida this finding suggests that there are other factors influencing healthrelated quality of life which were not measured in this research.
It is recommended that, the information provided by health-related quality of life measures may be an important adjunct to traditional measures of therapeutic evaluation.
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Wai, EK, Nancy Young, BM Feldman, EM Badley e JG Wright. "The Relationship Between Function, Self-Perception, and Spinal Deformity: Implications for Treatment of Scoliosis in Children With Spina Bifida". Lippincott, Williams & Wilkins, 2005. https://zone.biblio.laurentian.ca/dspace/handle/10219/143.
Testo completoAbstract (sommario):
The purpose of this study was to determine the relationship of spinal deformity with physical function and self-perception in children with spina bifida. Ninety-eight eligible children with scoliosis and spina bifida were identified; 80 of them (82%) consented to participate. Spinal deformity was measured in many ways, including scoliosis, coronal balance, and pelvic obliquity. Measures of physical function included the Sitting Balance Scale, Jebsen Hand Scale, Hoffer Ambulation Scale, the Spine Bifida Spine Questionnaire, and the Activities Scale for Kids (ASK). Self-perception was determined with Harter's Self-Perception Profile. No relationship was found between spinal deformity and overall physical function (ASK). Of all aspects of spinal deformity, only coronal imbalance was significantly related to only one aspect of physical function (ie, sitting imbalance). No aspect of spinal deformity was related to self-perception. In conclusion, surgeons should be clear in their indications for surgery and recognize that in the short term the potential benefit of surgery may be, at best, to improve only sitting balance.
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Reinhardt, Henriette [Verfasser], Michael [Gutachter] Sailer e Martina [Gutachter] Messing-Jünger. "Lebensumstände von Erwachsenen mit Spina bifida / Henriette Reinhardt ; Gutachter: Michael Sailer, Martina Messing-Jünger". Magdeburg : Universitätsbibliothek Otto-von-Guericke-Universität, 2019. http://d-nb.info/1220035394/34.
Testo completo
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Reinhardt, Henriette Verfasser], Michael [Gutachter] Sailer e Martina [Gutachter] [Messing-Jünger. "Lebensumstände von Erwachsenen mit Spina bifida / Henriette Reinhardt ; Gutachter: Michael Sailer, Martina Messing-Jünger". Magdeburg : Universitätsbibliothek Otto-von-Guericke-Universität, 2019. http://nbn-resolving.de/urn:nbn:de:gbv:ma9:1-1981185920-141239.
Testo completo
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Gallagher, M. "Factors affecting the development of mathematical concepts in children with spina bifida and hydrocephalus". Thesis, Open University, 1985. http://oro.open.ac.uk/54922/.
Testo completo
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Kohleis, Katy [Verfasser]. "Seelische Gesundheit von Kindern und Jugendlichen mit infantiler Zerebralparese und Spina bifida / Katy Kohleis". Ulm : Universität Ulm, 2017. http://d-nb.info/1137264683/34.
Testo completo
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Johnson, Kiana R., David L. Wood e Brandon Rocque. "Predictive Validity of The Newly Developed Spina Bifida Transition Readiness Assessment Questionnaire (SB-TRAQ)". Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/5197.
Testo completoAbstract (sommario):
Background:
Measuring the acquisition of self-management skills are part of evidence based health care transition practice. Youth with Spina Bifida have significant demands for self-management and high self-care burden. We developed an 11 item Spina-Bifida -TRAQ to assess self-management skills specific for Spina Bifida including urine, stool continence management, and skin and shunt maintenance. A detailed description of the SB-TRAQ, its reliability and criterion validity are presented elsewhere.
Objective:
To examine the predictive validity of the Spina Bifida-TRAQ among youth with Spina Bifida.
Design/Methods:
Participants include 90 youth with Spina Bifida who attend a clinic participating in the National Spina Bifida Patient Registry (NSBPR) (see Table1 for demographics). Youth completed the newly developed 11-item SB-TRAQ. De-identified NSBPR data from the electronic medical record (EMR) was linked with participants’ responses from the SBTRAQ. Two separate regressions were conducted using: age, sex, race, ethnicity, insurance, lesion level, lifetime # of shunt revisions, and SB-TRAQ to predict urinary incontinence (UI) episodes/month, and stool incontinence (SI) episodes/month.
Results:
Two separate multiple linear regressions were calculated to predict frequency (times per month) of UI and SI based on age, sex, race, ethnicity, insurance, having an IEP, spinal cord lesion level, lifetime number of shunt revisions, and SB-TRAQ. For UI, a significant regression equation was found (F(9,77) = 2.44, p<.001), with an R2 of .22. SB-TRAQ and IEP were significant predictors of UI; youths’ UI decreased 1.15 days/month for each point increase in SB-TRAQ; youth with an IEP had .83 more episodes of UI/month than did youth without an IEP. The model for SI had a significant regression equation (F(9,75) = 3.18, p<.001), with an R2 of .28. SB-TRAQ and lesion level were significant predictors of SI; youths SI decreased .58 days for each point increase in SB-TRAQ; each lower lesion levels (.13/level) had fewer SI episodes/month than did those with higher lesion levels.
Conclusion(s):
46
Eames, Michael H. A. "'Walking the tightrope' : the excursion of the centre of mass in children with spina bifida". Thesis, Queen's University Belfast, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.322646.
Testo completo
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Bellin, Melissa Hayden. "Examination of an Ecological Model of Adjustment for Adolescent Siblings of Youth with Spina Bifida". VCU Scholars Compass, 2006. http://scholarscompass.vcu.edu/etd_retro/46.
Testo completoAbstract (sommario):
While much research has focused on the psychosocial health of youth with spina bifida and their parents, less is known about the sibling experience. This cross-sectional mixed method study tested an ecological model of adjustment for adolescent siblings using self-report surveys. Convenience sampling methods were used to recruit 224 families from the Spina Bifida Association of America and three spina bifida clinic sites. The central hypotheses evaluated whether a set of ecological variables (stress appraisal, satisfaction with family functioning, warmth and conflict in the sibling relationship, and peer support) predicted sibling self-concept, prosocial behavior, and behavior difficulties, after controlling for spina bifida severity, length of time having a brother/sister with spina bifida, and sibling age. A potential moderating influence of sibling gender and birth order was also examined. A qualitative component was included to ascertain whether the variables included in the ecological model captured those concepts reported as salient by the siblings. Hierarchical regression equations tested the central hypotheses. Content analysis was performed on the qualitative data, with journaling and an external auditor used to enhance rigor.The ecological model explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties. Significant individual risk and protective factors were observed at several layers of sibling life, and there were divergent predictors of self-concept and behavior. Birth order emerged as an important moderating variable in several regression equations. The qualitative analysis revealed five major domains and twenty-one themes capturing the lived experience of siblings. Their stories reflected overall acceptance for the omnipresence of spina bifida, though ongoing difficulties such as jealousy, embarrassment, and guilt were evident, particularly for those participants in early adolescence. The journey toward acceptance of spina bifida was one marked by intense, and at times conflicted, emotions. Findings from this research suggest family-centered care may be enhanced by clarifying and supporting sibling perception of the impact of spina bifida, promoting a healthy family milieu characterized by communication sharing, growth opportunities, and positive sibling interactions, and encouraging opportunities for peer socialization.
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Johnson, Kiana R., David L. Wood, Brandon Rocque e Katherine Barnes. "The Reliability and Validity of a Newly Developed Spina Bifida Specific Transition Readiness Assessment Questionnaire". Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/5198.
Testo completoAbstract (sommario):
Background:
Measuring the acquisition of self-management and health care utilization skills are part of evidence based health care transition practice. Youth with Spina Bifida (SB) have significant demands for self-management and high self-care burden. To complement HCT skills assessed in the TRAQ, we developed an 11 item SB-TRAQ to assess self-management skills specific to Spina Bifida. Similar to the TRAQ, the SB-TRAQ uses a 5-point Likert responses using Stages of Change.
Objective:
To develop and assess the reliability and validity of a questionnaire to measure independence and skill acquisition for youth with SB.
Design/Methods:
Working with a multidisciplinary team of experts in the care of youth with SB we developed a twelve item questionnaire specific to the main facets of SB self-care and -management including urine and stool continence, prevention of skin breakdown and awareness of signs of shunt malfunction. The items were reviewed and revised through several iterations by healthcare providers and patients. The SB-TRAQ was fielded in an SB Specialty Clinic participating in the National Spina Bifida Patient Registry (NSBPR). Ninety youth with SB completed the 20-item TRAQ and the 12-item SB-TRAQ. Item response means, and distributions were assessed. A principal component analysis (PCA) was conducted with oblique rotation (promax). We also assessed criterion validity by examining the correlation of the SB-TRAQ supplement with the TRAQ and age.
Results:
Sample characteristics and scale information for the TRAQ and SB-TRAQ supplements are displayed in Table 1, including a Cronbach alpha of 0.9 for the SB-TRAQ. The item characteristics are provided in Table 2. Results of the factor analysis show eleven items loaded onto one factor, with almost all items loadings > 0.7 . One item did not load, resulting in an 11 item solution. The primary factor explained 62% of the variance. Intraclass correlations of the SB-TRAQ supplement with the TRAQ overall scale and subscales demonstrated good criterion validity (TRAQ overall ICC = .74; ICCs varied among the subscales and the SB-TRAQ). Additionally, the SB-TRAQ, as hypothesized, was significantly and positively correlated with age (Pearson correlation .29, p<.01).
Conclusion(s):
Results of our analyses demonstrate that the SB-TRAQ had good internal reliability and excellent criterion validity as demonstrated by strong correlation with age and the validated TRAQ. The SB-TRAQ can be a useful tool to help youth with SB achieve independence and self-management.
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Durrant, Michele. "Raising children who have spina bifida or cerebral palsy, a comparison of mothers' accounts of stigma". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk1/tape4/PQDD_0023/MQ50443.pdf.
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Dady, Alwyn. "Ségrégation cellulaire lors de la neurogenèse précose : les cadhérines font Sécession". Paris 6, 2012. http://www.theses.fr/2012PA066377.
Testo completoAbstract (sommario):
Les transitions de cadhérines sont souvent impliquées dans des phénomènes de ségrégation cellulaire mettant en jeu un phénomène de Transition Epithélium-Mésenchyme (TEM). Cependant, lors de la formation du système nerveux central, la transition E-/N-cadhérine n’entraîne pas de TEM et, contrairement au modèle en vigueur, nos résultats montrent que celle-ci n’est absolument pas un prérequis nécessaire aux mouvements morphogénétiques de la neurulation. Le point important lors de la formation du système nerveux central semble surtout être le contrôle de la cinétique de cette transition E-/N-Cadhérine. Le système nerveux central d’oiseau se forme au cours du développement selon des modes bien distincts : dans la région antérieure de l’embryon, la neurulation primaire ; dans la région postérieure, la neurulation dite secondaire conduit à un tube nerveux généré par accrétion cellulaire dont la lumière centrale est créée par cavitation. Dans la région thoracique, le tube neural se forme selon un mode totalement original ayant certaines caractéristiques des deux modes classiques, c’est la neurulation intermédiaire. Les précurseurs neuraux du tube neural intermédiaire et secondaire effectuent une TEM puis migrent postérieurement de manière coordonnée et dirigée grâce au dépôt polarisé de fibronectine induit par la protéine de la polarité planaire, Prickle, puis se ré-épithélialisent. Les Cellules de la Crête Neurale (CCN) constituent un tissu à part du tube neural. Nous montrons que ces cellules se distinguent du reste du neuroépithélium par un répertoire d’expression de cadhérines spécifiquesCadherin transitions play a part in cell segregation phenomenon, involving an Epithelium Mesenchyme Transition phenomenon (EMT). However, during the development of the central nervous system, the E-/N-cadherin transition doesn’t cause an EMT and, unlike the current model, our results show that the E-/N-cadherin switch is not a necessary element in morphogenetic movements of neurulation. The important part in the central nervous system development seems to be mainly the control of the kinetic of this E-/N-Cadherin switch. Avian central nervous system develops according to specific ways: in the anterior part of the embryo, the primary neurulation ; the secondary neurulation which ends to the development of the neural tube by cells accretion which central lumen is created by cavitation. In the thoracic part of the body, the neural tube develops in an original way, with few characteristics from the two classic processes. It is the transition neurulation. The neural precursor of the transition neural tube and secondary neural tube make an EMT, and then migrate in a coordinated and directed way thanks to the polarized deposit of fibronectin, induced by the protein of the planar cell polarity, Prickle, and then re-epithelialized themselves. Neural Crest cells represent a specific population of the neural tube cells. We show that these cells are different from the rest of neuroépithélium thanks to a repertory of expression of specific cadherins: E-Cadherin expressed by non-neural ectodermal cells, Cadherin-6B expressed by neural crest cells and N-cadherin expressed by canonical neural cells. This segregation is orchestrated by a subtle balance between BMP4 and FGF