NCT03298438已完成不适用
Study About Annoucement of the Diagnosis of Neurofibromatosis 1 in de Novo Forms
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 31
- 试验地点
- 1
- 主要终点
- Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form
研究概览
简要总结
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •Patients aged of 18 years old or lower
- •Refusal to participate
结局指标
主要结局
Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form
时间窗: Day 1 after diagnosis of neurofibromatosis
Questionnaire Impact of Event Scale
次要结局
- Study methods of annoucement and feeling of patients with a questionnaire(Day 1 after diagnosis of neurofibromatosis)
- Genetical analyze(Day 1 after diagnosis of neurofibromatosis)
- Psychological or psychiatrical impact(Day 1 after diagnosis of neurofibromatosis)
- Information about NF1(Day 1 after diagnosis of neurofibromatosis)
研究者
研究点 (1)
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