Study About Annoucement of the Diagnosis of Neurofibromatosis 1 in de Novo Forms (NF1)

Regional University Hospital Center (CHRU)

Status: Completed

Conditions: Post Traumatic Stress Disorder; Neurofibromatosis 1; Diagnoses Disease

Study type: Observational

Funder types: Other

Identifiers

NCT03298438

NF1

Details and patient eligibility

About

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.

Enrollment: 31 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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