Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
概览
- 阶段
- 不适用
- 干预措施
- 未指定
- 疾病 / 适应症
- Erdheim-Chester Disease
- 发起方
- Memorial Sloan Kettering Cancer Center
- 入组人数
- 500
- 试验地点
- 1
- 主要终点
- Create registry for Erdheim-Chester Disease and Other Histiocytoses
- 状态
- 招募中
- 最后更新
- 3个月前
概览
简要总结
The investigators want to understand more about what kinds of health problems are caused by histiocytosis, what happens as a result of different treatments, and how ECD affects people's lives, their feelings and their attitudes. The investigators also want to learn how these things change over time for people with these conditions. To try to figure this out, doctors would like to collect information about people who have histiocytosis and how they are treated for this disease.
Some participants will be asked to complete a brief interview over the telephone. Only a limited number of interviews will take place, and not everyone will be asked to participate in the interview. It is okay if the participant does not want to participate in the interview portion. If this is the case, the participant should let the study team member know when contacted.
研究者
入排标准
入选标准
- •Diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm by either 1) documented histopathologic establishing ECD or HN or 2) documented histopathologic findings compatible with Erdheim-Chester disease or HN in the context of corroborating clinical and/or radiologic findings or 3) documented radiologic findings, in the absence of a biopsy having been performed or yielding evaluable tissue, that are felt by the Principal Investigator to unequivocally represent an ECD/HN diagnosis given the clinical context or 4) self reported with supporting documentation upon medical record collection.
- •Proficiency in English, in the determination of the Investigator or by self report.
- •Willing to have historical and future HN-related health records sent to Registry review.
排除标准
- •Patients unwilling to sign consent.
- •Participants under the age of 18.
结局指标
主要结局
Create registry for Erdheim-Chester Disease and Other Histiocytoses
时间窗: 3 years
This ECD and Other Histiocytoses registry is motivated to capture comprehensive clinical information as well as patient-centered data about ECD and Other Histiocytoses patients.