Register of Patients With Prader-Willi Syndrome

Status Recruiting

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

Clinical Trial Details

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

View Details

See also
Status	Clinical Trial	Phase
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Completed	`NCT04526379` - Study of Emotion and Cognition Abilities of Children With PWS and Proposition of an Innovative Remediation	N/A
Terminated	`NCT03458416` - A Study to Assess the Long-Term Safety of Pharmaceutical Grade Synthetic Cannabidiol Oral Solution in Participants With Prader-Willi Syndrome	Phase 2
Completed	`NCT03718416` - Natural History Study of Serious Medical Events in PWS
Completed	`NCT05322096` - Study to Evaluate Efficacy, Safety, and Tolerability of RGH-706 in Prader-Willi Syndrome	Phase 2
Completed	`NCT02205450` - Growth Hormone in Children Under 2 Years With Prader-Willi in Hospital of Sabadell
Terminated	`NCT02179151` - Double-Blind, Placebo Controlled, Phase 3 Trial of ZGN-440 (Beloranib) in Obese Subjects With Prader-Willi Syndrome	Phase 3
Completed	`NCT00375089` - Characteristics of Prader-Willi Syndrome and Early-onset Morbid Obesity	N/A
Completed	`NCT00004351` - Study of Phenotype and Genotype Correlations in Patients With Contiguous Gene Deletion Syndromes	N/A
Recruiting	`NCT05938543` - Cerebellar TMS and Satiety in Prader-Willi Syndrome	N/A
Suspended	`NCT05879614` - An Open-Label Study of Oral NNZ-2591 in Prader-Willi Syndrome (PWS-001)	Phase 2
Recruiting	`NCT03031626` - Oxygen Versus Medical Air for Treatment of CSA in Prader Will Syndrome	Phase 4
Withdrawn	`NCT04086810` - An Open-Label Study of DCCR Tablet in Patients With PWS	Phase 3
Completed	`NCT02629991` - Oxytocin vs. Placebo for the Treatment Hyperphagia in Children and Adolescents With Prader-Willi Syndrome	Phase 2
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	`NCT06448871` - Ultrasound to Assess Sarcopenia in Prader Willi Syndrome
Enrolling by invitation	`NCT03655223` - Early Check: Expanded Screening in Newborns
Recruiting	`NCT05939453` - Impact of Bright Light Therapy on Prader-Willi Syndrome	N/A