Register of Patients With Prader-Willi Syndrome
ConditionPrader-Willi Syndrome
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity Hospital, Toulouse
About this trial
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
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
all subjects with a Prader-Willi Syndrome
Disqualifiers
None
Trial population
Patients will be included by the paediatric endocrinologists or the endocrinologists for adults of each region based on their own recruitment
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Data collection
Other interventionThis 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.
Treatment groups
No treatment groups listed
Trial outcomes
Primary outcomes
1
collect data about patients
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
Time frame
BaselineSecondary outcomes
1
collect data about patients
modalities of follow-up and clinical management and a questionnaire to evaluate quality of life of the family and social data
Time frame
During 10 years at leastSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov