Adolescent Projections During Transition in Prader-Willi Syndrome

Not Applicable

Not yet recruiting

• Conditions: Prader-Willi Syndrome
• Interventions: Behavioral: Phone interview

• 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

Study Timeline

• Status Verified: 2024-02
• Study First Submitted: 2024-02-14
• Study First Submitted QC: 2024-02-22
• Study First Posted: 2024-02-26
• Last Update Submitted: 2024-02-26
• Last Update Posted: 2024-02-28
• Study Start: 2024-03-01
• Primary Completion: 2024-12-01
• Study Completion: 2024-12-01

Recruitment & Eligibility

• Status: NOT_YET_RECRUITING
• Sex: All
• Target Recruitment: 20

Inclusion Criteria

• 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

Exclusion Criteria

• 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

Arm && Interventions

Group	Intervention	Description
Phone interview	Phone interview	Patients will then be contacted by the investigator to arrange a telephone appointment date. On the day of the telephone appointment, the psychiatry intern will call the patient to conduct the interview which will last between 30 and 60 minutes. At the end of the telephone interview, the patient's participation in the research will end.

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.

Trial Locations

Locations (1)

CHU de Toulouse; 🇫🇷 Toulouse, France