Register of Patients With Prader-Willi Syndrome

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

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT02829684

Enrollment

500

Registered

2016-07-12

Start date

2009-03-31

Completion date

2026-12-31

Last updated

2024-02-20

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Prader-Willi Syndrome

Brief 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

Interventions

OTHERData 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.

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Inclusion criteria

* all subjects with a Prader-Willi Syndrome

Exclusion criteria

Design outcomes

Primary

Measure	Time frame	Description
collect data about patients	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

Secondary

Measure	Time frame	Description
collect data about patients	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

Countries

France

Contacts

Primary ContactTAUBER Maité, MD PhD

tauber.m@chu-toulouse.fr

Backup ContactMOLINAS Catherine, CRA

molinas.c@chu-toulouse.fr

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026