Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 300
- 试验地点
- 1
- 主要终点
- Entry into a training program, validation of a diploma, obtaining a 1st stable job
研究概览
简要总结
Rare diseases are often synonymous with difficulties for sufferers, whether physical, mental or social. Patients suffering from rare diseases face specific problems, such as the long wait for a diagnosis, the geographical distance between the rare disease reference center and home, and the isolation created by this very disabling disease... Children suffering from rare genetic diseases have difficulty accessing higher education, but above all in finding an internship or work-study placement, due to the rarity of their disability.
The aim of this study, entitled "Imagine La Suite", is to assess the difficulties encountered by young people with rare genetic diseases and disabilities in their search for vocational and university training or employment.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 15 Years 至 25 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Current age 15-25 years born between 1997 and 2007
- •Rare genetic disease confirmed by a genetic test, originating in childhood and followed at Necker in the networks of the following disease reference centers:
- •epilepsy without deficiency ;
- •genodermatosis ;
- •constitutional bone diseases ;
- •craniofacial malformations;
- •deafness;
排除标准
- •Patient or parent's opposition to study participation
- •Patient with intellectual disability (IQ < 70)
- •Patients with pathologies involving intellectual disability and patients with a clinical sign of intellectual disability.
结局指标
主要结局
Entry into a training program, validation of a diploma, obtaining a 1st stable job
时间窗: 18 Months
次要结局
- Characterize the pathology components of the care pathway, barriers/ strengths to inclusion(18 Months)
- Use of tools to facilitate socio-professional inclusion(18 Months)
- Number of HR company representatives made aware of rare diseases(18 Months)