Adolescent Projections During Transition in Prader-Willi Syndrome
- Conditions
- Prader-Willi Syndrome
- Registration Number
- NCT06279052
- Lead Sponsor
- University Hospital, Toulouse
- Brief Summary
Single-center, cross-sectional qualitative study seeking to collect the experience of adolescence and the transition to adulthood of people affected by Prader-Willi syndrome in a population. To do this, the present will carry out a qualitative study with a reflexive thematic analysis of the data collected through semi-structured interviews using an interview guide.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 20
- Patients with genetically confirmed Prader-Willi syndrome
- Patients affiliated or beneficiaries of a social security system
- Patients known and followed by the reference center, presenting sufficient intellectual skills to answer the interview questions
- Refusal of family participation (if minor)
- Refusal of participation by the patient or his guardian (if of legal age)
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SINGLE_GROUP
- Primary Outcome Measures
Name Time Method Experience of the disease and aspirations regarding the future 1 hour The main objective of this study is to explore their experience of the disease and their aspirations regarding their future in a population of older adolescents and young adults with Prader-Willi syndrome. A questionnaire created by the clinical investigator containing personal questions will be applied to all patients. There is no scale.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
CHU de Toulouse
🇫🇷Toulouse, France
CHU de Toulouse🇫🇷Toulouse, FranceGrégoire BENVEGNUContactbenvegnu.g@chu-toulouse.frDalil BenkanounContactdalil.benkanoun@hotmail.fr