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Completed

NCT Number: NCT03298438

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

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.

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Key information

Conditions

Neurofibromatosis 1 Congenital, Hereditary, and Neonatal Diseases and Abnormalities Diagnoses Disease Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Mental Disorders Neoplasms Neoplasms by Histologic Type Neoplasms, Nerve Tissue Neoplastic Syndromes, Hereditary Nerve Sheath Neoplasms Nervous System Diseases Neurocutaneous Syndromes Neurodegenerative Diseases Neurofibroma Neurofibromatoses Neuromuscular Diseases Peripheral Nervous System Diseases Post Traumatic Stress Disorder Stress Disorders, Post-Traumatic Stress Disorders, Traumatic Trauma and Stressor Related Disorders

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

CHRU de Brest

Brest, 29609, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form

    Time frame: Day 1 after diagnosis of neurofibromatosis

    Questionnaire Impact of Event Scale

Secondary outcomes

  1. Study methods of annoucement and feeling of patients with a questionnaire

    Time frame: Day 1 after diagnosis of neurofibromatosis

    Questionnaires about: methods of announcement (who? when? how?)

  2. Genetical analyze

    Time frame: Day 1 after diagnosis of neurofibromatosis

    Genetical analyze

  3. Psychological or psychiatrical impact

    Time frame: Day 1 after diagnosis of neurofibromatosis

    Psychological or psychiatrical impact

  4. Information about NF1

    Time frame: Day 1 after diagnosis of neurofibromatosis

    Questions about look for information about disease

Sponsors and collaborators

Lead sponsor

University Hospital, Brest

Other

Registry information

Acronym: NF1

Important dates

Study start
2016
Primary completion
2016
Study completion
2016
First posted
Oct 2, 2017
Registry last updated
Oct 2, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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