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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03298438

Acronym

NF1

Enrollment

Registered

2017-10-02

Start date

2016-07-15

Completion date

2016-12-31

Last updated

2017-10-02

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Diagnoses Disease, Neurofibromatosis 1, Post Traumatic Stress Disorder

Brief summary

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

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

Design outcomes

Primary

Measure	Time frame	Description
Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form	Day 1 after diagnosis of neurofibromatosis	Questionnaire Impact of Event Scale

Secondary

Measure	Time frame	Description
Study methods of annoucement and feeling of patients with a questionnaire	Day 1 after diagnosis of neurofibromatosis	Questionnaires about: methods of announcement (who? when? how?)
Genetical analyze	Day 1 after diagnosis of neurofibromatosis	Genetical analyze
Psychological or psychiatrical impact	Day 1 after diagnosis of neurofibromatosis	Psychological or psychiatrical impact
Information about NF1	Day 1 after diagnosis of neurofibromatosis	Questions about look for information about disease

Countries

France

Outcome results