Adolescent Projections During Transition in Prader-Willi Syndrome

NCT ID: NCT06279052

Last Updated: 2024-02-28

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 20 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2024-03-01
• Study Completion Date: 2024-12-01

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.

Conditions

Prader-Willi Syndrome

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

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.

Group Type: EXPERIMENTAL

Phone interview

Intervention Type: BEHAVIORAL

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

Interventions

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

Intervention Type: BEHAVIORAL

Eligibility Criteria

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)

• Minimum Eligible Age: 15 Years
• Maximum Eligible Age: 20 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

University Hospital, Toulouse

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Grégoire BENVEGNU

Role: PRINCIPAL_INVESTIGATOR

University Hospital, Toulouse

Locations

CHU de Toulouse

Toulouse, , France

Countries

France

Central Contacts

Grégoire BENVEGNU

Role: CONTACT

benvegnu.g@chu-toulouse.fr

05 34 55 86 78 ext. +33

Facility Contacts

Grégoire BENVEGNU

Role: primary

benvegnu.g@chu-toulouse.fr

Dalil Benkanoun

Role: backup

dalil.benkanoun@hotmail.fr

Other Identifiers

RC31/23/0535

Identifier Type: -

Identifier Source: org_study_id