Survey on Multiple Osteochondromas and Enchondromatoses During the Transition From Paediatric Care to Adult Care
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 91
- 试验地点
- 1
- 主要终点
- Self reported experience of transition from paediatric to adult care
研究概览
简要总结
This prospective observational study aims to understand the transition experiences and unmet needs of patients living with multiple osteochondromas or enchondromatoses during the paediatric to adult care, in order to produce a Patient Journey by collecting data through an online survey.
详细描述
The transition from paediatric to adult care represents a crucial phase for patients living with rare skeletal diseases, yet knowledge of patient experiences during this period remains limited. This study focuses on multiple osteochondromas and enchondromatoses, all rare bone conditions, providing guidance for patients, caregivers, and healthcare providers to improve care continuity and outcomes.
This study aims to recruit approximately 50 adult participants (≥18 years) across European countries. Participants will complete an online survey on their transition experience from preadolescence through adulthood. Results will be synthesized into a Patient Journey which will map the disease progression and the patient needs.
The research is conducted by the Department of Rare Skeletal Disorders at Istituto Ortopedico Rizzoli, Bologna, Italy, one of the reference centres, as well as the coordinating centre, of ERN BOND, the European Reference Network for rare BONe Diseases (https://ernbond.eu/), since its creation in 2017.
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
- 是
入选标准
- •Adult subjects (≥ 18 years) affected by multiple osteochondromas or enchondromatoses.
排除标准
- •Subjects not affected by multiple osteochondromas or enchondromatoses.
结局指标
主要结局
Self reported experience of transition from paediatric to adult care
时间窗: Baseline, at the completion of the online questionnaire
Investigate via self-reporting tool used to evaluate the clinical symptoms experienced by adult patients subjective experiences of the transition phase in order to develop a Patient Journey that highlights clinical and psycosocial needs, care and gaps
次要结局
未报告次要终点
研究者
Luca Sangiorgi
Director of Department of Rare Skeletal Disorders
Istituto Ortopedico Rizzoli