NCT02829684

Register of Patients With Prader-Willi Syndrome

Implementation of a National Register of Children and Adults Presenting Prader-Willi Syndrome

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 500 (estimated)
• Sponsor: University Hospital, Toulouse · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

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

Conditions

• Prader-Willi Syndrome

Interventions

Type	Name	Description
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.

Timeline

• Start date: 2009-03-01
• Primary completion: 2025-12-01
• Completion: 2026-12-01
• First posted: 2016-07-12
• Last updated: 2024-02-20

Locations

1 site across 1 country: France