Clinical trial · Observational
Study About Annoucement of the Diagnosis of Neurofibromatosis 1 in de Novo Forms
NCT03298438CI-TRIAL-00029739NF1completedClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
Neurofibromatosis type 1 (NF1) is one of the most common autosomal dominant genetic disorders. The aim of our study was to evaluate post-traumatic stress disorder (PTSD) in patients and their families following the disclosure of sporadic NF1. Diagnosis of NF1 was retained according to NIH criteria, familial forms were excluded. The French version of the Impact of Event Scale-Revised was used for the diagnosis of PTSD.
Conditions
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Diagnoses Disease | — | UNRESOLVED | — |
| Neurofibromatosis 1 | — | UNRESOLVED | — |
| Post Traumatic Stress Disorder | — | UNRESOLVED | — |
Interventions
Interventions (0)
Data not yet available
No intervention recorded.
Design
Arms and outcomes
Arms (0)
[]Primary outcomes (1)
- measure
- Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form
- timeFrame
- Day 1 after diagnosis of neurofibromatosis
- description
- Questionnaire Impact of Event Scale
Secondary outcomes (4)
- measure
- Study methods of annoucement and feeling of patients with a questionnaire
- timeFrame
- Day 1 after diagnosis of neurofibromatosis
- description
- Questionnaires about: methods of announcement (who? when? how?)
- measure
- Genetical analyze
- timeFrame
- Day 1 after diagnosis of neurofibromatosis
- description
- Genetical analyze
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Inclusion Criteria: * Patient aged 18 or more, or parent of a children * Patient with a neurofibromatosis type 1 or parent of a children with a neurofibromatosis 1 in de novo form * Followed for a neurofibromatosis type 1 de novo at the dedicated consultation in the University Hospital of Brest, since april 2013 * Agree to participate Exclusion Criteria: * Patients aged of 18 years old or lower * Refusal to participate
References
Publications (0)
Data not yet available
No reference posted for this study.