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Clinical Trial Summary

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


Clinical Trial Description

n/a


Study Design


Related Conditions & MeSH terms


NCT number NCT02829684
Study type Observational
Source University Hospital, Toulouse
Contact TAUBER Maité, MD PhD
Email tauber.m@chu-toulouse.fr
Status Recruiting
Phase
Start date March 2009
Completion date December 2026

See also
  Status Clinical Trial Phase
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Recruiting NCT02297022 - Deep Brain Stimulation for the Treatment of Obesity in Patients With Prader-Willi Syndrome Phase 1
Not yet recruiting NCT02263781 - PREPL in Health and Disease N/A
Completed NCT00551343 - Gut Derived Hormones, Body Composition and Metabolism in Prader-Willi Syndrome N/A
Recruiting NCT05939453 - Impact of Bright Light Therapy on Prader-Willi Syndrome N/A
Recruiting NCT04463316 - GROWing Up With Rare GENEtic Syndromes
Active, not recruiting NCT03714373 - Open-Label Extension Study of DCCR in PWS Followed by Double-Blind, Placebo-Controlled, Randomized Withdrawal Period Phase 3