Register of Patients With Prader-Willi Syndrome
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|ClinicalTrials.gov Identifier: NCT02829684|
Recruitment Status : Recruiting
First Posted : July 12, 2016
Last Update Posted : January 5, 2018
Prader-Willi Syndrome (PWS) is a rare syndrome with a prevalence of 15 to 20 000 at birth. PWS represents a large fraction of mental retardation syndromes due to a genetic cause and the most frequent cause of genetic obesity. The majority of the patients are seen by paediatricians. This syndrome is responsible for severe physical, psychological and social impairments.
The diversity and the severity of the manifestations of this disease explain the requirement of multidisciplinary care which deserve specific evaluation. Today the follow-up and management of a great proportion of these patients are greatly insufficient if not absent.
Teams strongly lack information on the natural history of this severe disease and on the factors involved in its evolution and the outcome of these patients throughout life. The present project is to implement a register in the whole country for children and adult patients
|Condition or disease||Intervention/treatment|
|Prader-Willi Syndrome||Other: Data collection|
|Study Type :||Observational|
|Estimated Enrollment :||500 participants|
|Official Title:||Implementation of a National Register of Children and Adults Presenting Prader-Willi Syndrome|
|Actual Study Start Date :||March 2009|
|Estimated Primary Completion Date :||December 2020|
|Estimated Study Completion Date :||December 2020|
- Other: Data collection
This register will follow the evolution of the clinical practices and their consequences in the health of the patients, in all regions of France in order to have a national register. for Children and adults.
- collect data about patients [ Time Frame: Baseline ]Circumstances of diagnosis, genetic diagnosis, modalities of follow-up and clinical management and a questionnaire to evaluate quality of life of the family and social data
- collect data about patients [ Time Frame: During 10 years at least ]modalities of follow-up and clinical management and a questionnaire to evaluate quality of life of the family and social data
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02829684
|Contact: TAUBER Maité, MD PhDfirstname.lastname@example.org|
|Contact: MOLINAS Catherine, CRAemail@example.com|
|University Hospital of Children||Recruiting|
|Toulouse, France, 31059|
|Principal Investigator:||Tauber Maité, MD||University Hospital, Toulouse|