Register of Patients With Prader-Willi Syndrome
Implementation of a National Register of Children and Adults Presenting Prader-Willi Syndrome
University Hospital, Toulouse · NCT02829684
This study is creating a national register to collect information about people with Prader-Willi Syndrome to better understand their needs and improve their care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Sex | All |
| Sponsor | University Hospital, Toulouse (other) |
| Locations | 1 site (Toulouse) |
| Trial ID | NCT02829684 on ClinicalTrials.gov |
What this trial studies
This project aims to create a comprehensive register for individuals diagnosed with Prader-Willi Syndrome (PWS) across the country. By collecting data on the natural history and progression of PWS, the study seeks to address the current gaps in knowledge regarding the condition's manifestations and the effectiveness of multidisciplinary care. The observational approach will involve gathering information from both children and adults with PWS to better understand their needs and improve management strategies. The ultimate goal is to enhance the quality of care and support for patients living with this complex syndrome.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals of all ages diagnosed with Prader-Willi Syndrome.
Not a fit: Patients without a diagnosis of Prader-Willi Syndrome will not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could lead to improved management and care strategies for patients with Prader-Willi Syndrome.
How similar studies have performed: While there may be limited data on similar registries, the need for comprehensive understanding in rare syndromes like PWS suggests that this approach could yield valuable insights.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * all subjects with a Prader-Willi Syndrome Exclusion Criteria: \-
Where this trial is running
Toulouse
- University Hospital of Children — Toulouse, France (RECRUITING)
Study contacts
- Principal investigator: Tauber Maité, MD — University Hospital, Toulouse
- Study coordinator: TAUBER Maité, MD PhD
- Email: tauber.m@chu-toulouse.fr
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Prader-Willi Syndrome