Registry for patients with Erdheim-Chester Disease and other histiocytoses
Memorial Sloan Kettering Cancer Center · NCT03329274
This study is collecting information from people with Erdheim-Chester Disease and other histiocytoses to better understand their experiences and improve care for these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Memorial Sloan Kettering Cancer Center (other) |
| Locations | 1 site (New York, New York) |
| Trial ID | NCT03329274 on ClinicalTrials.gov |
What this trial studies
This registry aims to gather comprehensive information about patients diagnosed with Erdheim-Chester Disease and other histiocytic neoplasms. By collecting health data, treatment outcomes, and patient experiences, the study seeks to understand the impact of these diseases over time. Participants may also be invited to share their experiences through brief telephone interviews, although participation in interviews is optional. The goal is to enhance knowledge about histiocytosis and improve future patient care.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or other histiocytic neoplasms.
Not a fit: Patients under the age of 18 or those unwilling to provide consent will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could lead to better understanding and management of Erdheim-Chester Disease and related conditions.
How similar studies have performed: While registries for rare diseases have shown success in gathering valuable data, this specific approach for histiocytoses is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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. Exclusion Criteria: * Patients unwilling to sign consent. * Participants under the age of 18.
Where this trial is running
New York, New York
- Memorial Sloan Kettering Cancer Center — New York, New York, United States (RECRUITING)
Study contacts
- Principal investigator: Eli Diamond, MD — Memorial Sloan Kettering Cancer Center
- Study coordinator: Eli Diamond, MD
- Email: diamone1@mskcc.org
- Phone: 212-610-0243
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Erdheim-Chester Disease, registry, Other Histiocytoses, Langerhans cell histiocytosis, Rosai Dorfman disease, 17-516