Registry for Patients with Erdheim-Chester Disease and Other Histiocytoses

Launched by MEMORIAL SLOAN KETTERING CANCER CENTER · Oct 27, 2017

Keywords

ClinConnect Summary

This clinical trial is focused on learning more about Erdheim-Chester Disease and other similar conditions, which are types of diseases caused by histiocytosis. Researchers want to understand the health problems associated with these conditions, how different treatments affect patients, and how the disease impacts people’s daily lives and emotions over time. To gather this information, doctors will collect data from patients diagnosed with these diseases and may conduct brief telephone interviews with some participants. However, not everyone will be asked for an interview, and it’s completely fine if someone prefers not to take part in that part of the study.

To be eligible for this trial, participants must be diagnosed with Erdheim-Chester Disease or another related condition, be at least 18 years old, and able to speak English. They also need to agree to share their health records related to their disease. If you join the study, you can expect to provide some information about your health and experiences, which will help researchers understand these diseases better. Your participation could contribute to valuable insights that can improve care for patients with histiocytosis in the future.

Gender

ALL

Eligibility 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.