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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

31 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-07-15

Study Completion Date

2016-12-31

Brief Summary

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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.

Detailed Description

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Conditions

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Neurofibromatosis 1 Diagnoses Disease Post Traumatic Stress Disorder

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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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

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Responsible Party

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Responsibility Role SPONSOR

Locations

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CHRU de Brest

Brest, , France

Site Status

Countries

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France

Other Identifiers

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NF1

Identifier Type: -

Identifier Source: org_study_id