Brief Title
Study About Annoucement of the Diagnosis of Neurofibromatosis 1 in de Novo Forms
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.
Study Type
Observational
Primary Outcome
Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form
Secondary Outcome
Study methods of annoucement and feeling of patients with a questionnaire
Condition
Neurofibromatosis 1
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Estimated Enrollment
31
Start Date
July 15, 2016
Completion Date
December 31, 2016
Primary Completion Date
December 31, 2016
Eligibility Criteria
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
Gender
All
Ages
18 Years - N/A
Accepts Healthy Volunteers
No
Contacts
, ,
Location Countries
France
Location Countries
France
Administrative Informations
NCT ID
NCT03298438
Organization ID
NF1
Responsible Party
Sponsor
Study Sponsor
University Hospital, Brest
Study Sponsor
, ,
Verification Date
September 2017