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NCT06279052 Clinical Trial

Adolescent Projections During Transition in Prader-Willi Syndrome

Prader-Willi Syndrome Clinical Trial

— APT-WILL  

Official title:
What Projections Towards the Future During a Period of Transition? A Qualitative Study of Adolescents With Prader-Willi Syndrome

Clinical Trial Details — Status: Not yet recruiting

Administrative data
NCT number NCT06279052
Other study ID # RC31/23/0535
Secondary ID
Status Not yet recruiting
Phase N/A
First received
Last updated
Start date March 1, 2024
Est. completion date December 1, 2024

Study information
Verified date February 2024
Source University Hospital, Toulouse
Contact Grégoire BENVEGNU
Phone 05 34 55 86 78
Email benvegnu.g@chu-toulouse.fr
Is FDA regulated No
Health authority
Study type Interventional

Clinical Trial 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.

Recruitment information / eligibility
Status Not yet recruiting
Enrollment 20
Est. completion date December 1, 2024
Est. primary completion date December 1, 2024
Accepts healthy volunteers No
Gender All
Age group 15 Years to 20 Years
Eligibility 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

Related Conditions & MeSH terms

Intervention

Behavioral:
• Phone interview
Phone interview during which the experience of the transition to adulthood among adolescents and young adults with Prader Willi Syndrome will be retrieved

Locations
Country Name City State
France CHU de Toulouse Toulouse

Sponsors (1)
Lead Sponsor Collaborator
University Hospital, Toulouse

Country where clinical trial is conducted

France, 

Outcome
Type Measure Description Time frame Safety issue
Primary Experience of the disease and aspirations regarding the future 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. 1 hour
See also
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