Plain-English translation of NCT02829684 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is a registry study—a large database designed to collect medical information from children and adults living with Prader-Willi syndrome across the country. By participating, you help researchers and doctors understand how the condition develops, changes over time, and affects quality of life. This information will help improve how patients are cared for and managed.
Prader-Willi syndrome is a rare genetic condition that affects physical health, mental development, and social functioning. Currently, many patients don't receive the coordinated, specialized care they need. Doctors lack detailed information about how the condition progresses throughout a person's lifetime. This registry will fill that gap and help shape better care strategies.
You likely qualify if…
You likely don't qualify if…
Participation involves sharing your medical records, health history, and relevant information with the national registry. You would be enrolled as part of the ongoing database and your information would help contribute to understanding the natural history and long-term outcomes of Prader-Willi syndrome. The study is observational, meaning you are not receiving a new treatment—just helping researchers learn more about the condition.
AI-generated summary from trial data · Jun 19, 2026 · Not medical advice
France
Enrollment target
~500 participants
Started
March 2009
Primary completion
December 2025
This trial's estimated completion date has passed — the record may not be fully up to date.
Last updated on clinicaltrials.gov in February 2024.
Reach out to the team running this trial. Response times vary — some teams are faster than others.
Central contact
TAUBER Maité, MD PhD
University Hospital, Toulouse
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first — no email needed to get started.