Erdheim-Chester Disease
Conditions
Keywords
registry, Other Histiocytoses, Langerhans cell histiocytosis, Rosai Dorfman disease, 17-516
Brief summary
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.
Interventions
None listed
Sponsors
Memorial Sloan Kettering Cancer Center
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Create registry for Erdheim-Chester Disease and Other Histiocytoses | 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. |
Countries
United States
Contacts
Primary ContactEli Diamond, MD
Backup ContactKatherine Panageas, PhD
Outcome results
None listed