Register of Patients With Prader-Willi Syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* all subjects with a Prader-Willi Syndrome

Exclusion Criteria:

\-

Where it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Group therapy to help teens with Prader-Willi regulate emotions

  Teens with Prader-Willi Syndrome and their families will try a group therapy program to help calm emotions and reduce irritability and anxiety.

  Recruiting Children's Mercy Hospital Kansas City · Kansas City, Missouri · NCT07607730

• CSTI-500 in Prader-Willi Syndrome: a dose-escalation study for safety and efficacy

  This study tests CSTI-500 in people aged 13–50 with Prader-Willi syndrome to see if it is safe and helps with symptoms, using increasing doses guided by blood levels.

  Recruiting Phase 2 ConSynance Therapeutics · Nashville, Tennessee · NCT07348601

• Using Tirzepatide to treat obesity in young adults with Prader-Willi Syndrome and hypothalamic obesity

  This study is testing if a weight loss medication called Tirzepatide can help young adults with Prader-Willi Syndrome and hypothalamic obesity lose weight and improve their health.

  Recruiting at 3 sites Phase 4 Seattle Children's Hospital · Saint Paul, Minnesota and 2 other locations · NCT06901245

• Examining autistic traits and sensory profiles in children with Prader-Willi Syndrome

  This study looks at how autistic traits and sensory experiences show up in children with Prader-Willi Syndrome to better understand their needs and see if early oxytocin treatment makes a difference.

  Recruiting University Hospital, Toulouse · Toulouse · NCT06877715

• Inclusive physical activity program for adults with intellectual disabilities

  This study is testing a new fitness program for adults with intellectual disabilities to see if it helps them be more active and feel better over 16 weeks.

  Recruiting University of North Carolina, Chapel Hill · Fayetteville, Arkansas and 1 other locations · NCT06740162

• Using vagus nerve stimulation to improve emotion and thinking in Prader-Willi Syndrome

  This study is testing whether a new treatment using vagus nerve stimulation can help improve emotions and thinking skills in adults with Prader-Willi Syndrome.

  Recruiting at 3 sites University of Bordeaux · Bordeaux and 3 other locations · NCT06720571

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.