Psychiatric symptoms in people with White‑Sutton syndrome
Descriptive Study of Psychiatric Symptoms in White-Sutton Syndrome
This project will describe psychiatric symptoms in children and adults with White‑Sutton syndrome using interviews and questionnaires to better understand common mental health issues.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 30 (estimated) |
| Ages | 6 Years and up |
| Sex | All |
| Sponsor | Centre Hospitalier Universitaire Dijon Academic / other |
| Locations | 1 site (Dijon) |
| Trial ID | NCT07380594 on ClinicalTrials.gov |
What this trial studies
This observational project collects psychiatric information from French‑speaking individuals with genetically confirmed White‑Sutton syndrome using interviews and standardized questionnaires, conducted by phone, videoconference, or in person at CHU Dijon. Eligible participants are aged over 6 years and can complete a 1–2 hour questionnaire themselves or with a caregiver. The protocol documents anxiety, autism spectrum features, attention and behavioral problems, sleep and seizure‑related psychiatric manifestations, and other neuropsychiatric signs. Collected data will characterize symptom frequency and heterogeneity to improve clinical recognition and inform future research on interventions.
Who should consider this trial
Good fit: Ideal candidates are French‑speaking individuals aged over 6 years with genetically confirmed White‑Sutton syndrome (POGZ mutation) who, or whose carers, can complete a 1–2 hour questionnaire and provide consent.
Not a fit: Patients without genetic confirmation, non‑French speakers, children under 6, those unable to complete remote or phone interviews, or those who refuse consent are unlikely to participate or benefit from this project.
Why it matters
Potential benefit: If successful, the results could help clinicians better recognize common psychiatric features in White‑Sutton syndrome and guide more tailored care and future treatment research.
How similar studies have performed: Previous small descriptive reports have reported predominant anxiety and variable autism, attention, and behavioral features, but systematic, larger-scale data are still limited.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Individuals with White Sutton syndrome (genetic mutation identified by genetic testing) adults and children, and French speakers * Patient or carer able to complete a questionnaire in French lasting 1 to 2 hours * Age \> 6 years (lower age limit for the primary endpoint) * Consent of the patient (and their parents if the patient is a minor) and legal representative (for patients under guardianship or trusteeship) to participate in the study Exclusion Criteria: * Absence of genetic confirmation of the diagnosis * Refusal by parents or legal representatives to participate or authorise the use of data for research purposes * Technical impossibility of conducting the interview by videoconference or telephone * Unfeasible protocol * patient interruption
Where this trial is running
Dijon
- CHU Dijon Bourgogne — Dijon, France (Recruiting)
Study contacts
- Study coordinator: Raphaëlle MOTTOLESE
- Email: raphaelle.mottolese@chu-dijon.fr
- Phone: 03 80 29 53 13
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.