What this study is
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.
Study details
- Sponsor
- Memorial Sloan Kettering Cancer Center
- Conditions
- Erdheim-Chester Disease
- Enrolling
- 500 people
- Starts
- 2017-10-26
- Est. completion
- 2027-10
- Record
- View on ClinicalTrials.gov ↗
Who can join
Age 18 Years and overSex ALLHealthy volunteers Not acceptedYou may qualify if
- 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.
You can't join if
- Patients unwilling to sign consent.
- Participants under the age of 18.
Sign in and we'll check these against your records.Full criteria on ClinicalTrials.gov ↗
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Study locations (1)
1 openMemorial Sloan Kettering Cancer Center
New York, New York, United States
- Eli Diamond, PhD · Contact212-610-0243
- Katherine Panageas, MD · Contact646-888-8237
- Eli Diamond, MD · Principal investigator
Recruiting
Study team
Sponsor
Memorial Sloan Kettering Cancer Center
Study ID 17-516
Principal investigator
Eli Diamond, MD
Memorial Sloan Kettering Cancer Center
Frequently asked questions
The sponsor hasn't published answers to common questions for this trial.