NCT03990428招募中不适用
A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
适应症
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 250
- 试验地点
- 1
- 主要终点
- Supportive Care Needs of informal caregivers
研究概览
简要总结
This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?
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
- •Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim).
- •Proficiency to complete study assessments in English, evaluated at the time of consent.
- •Age 18 or over.
排除标准
- •Participant unwilling to sign consent.
- •Participant unable to complete web-based assessments.
结局指标
主要结局
Supportive Care Needs of informal caregivers
时间窗: 3 years
measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)
次要结局
未报告次要终点
研究者
研究点 (1)
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