Adolescent Projections During Transition in Prader-Willi Syndrome

NCT06279052 | Not Yet Recruiting

• 1 other identifier: RC31/23/0535
• Study Type: interventional
• Target: 20
• Locations: 1 country
• Sites: 1

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

Outcome Measures

Primary Outcomes (1)

• 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

Study Arms (1)

Phone interview

EXPERIMENTAL

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.

Behavioral: Phone interview

Interventions

Phone interview BEHAVIORAL

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

Phone interview

Eligibility Criteria

• Age: 15 Years - 20 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)

You may qualify if:

• 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

You may not qualify if:

• Refusal of family participation (if minor)
• Refusal of participation by the patient or his guardian (if of legal age)

Sponsors & Collaborators

• University Hospital, Toulouse: lead

Study Sites (1)

CHU de Toulouse

Toulouse, France

Location

MeSH Terms

Conditions

Prader-Willi Syndrome

Condition Hierarchy (Ancestors)

Intellectual Disability; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Chromosome Disorders; Genetic Diseases, Inborn; Imprinting Disorders; Obesity; Overweight; Overnutrition; Nutrition Disorders; Nutritional and Metabolic Diseases

Study Officials

• Grégoire BENVEGNU

  University Hospital, Toulouse

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Grégoire BENVEGNU

CONTACT

05 34 55 86 78; benvegnu.g@chu-toulouse.fr

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 14, 2024
• First Posted: February 26, 2024
• Study Start: March 1, 2024
• Primary Completion: December 1, 2024
• Study Completion: December 1, 2024
• Last Updated: February 28, 2024

Record last verified: 2024-02

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)