Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
ConditionErdheim-Chester Disease
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorMemorial Sloan Kettering Cancer Center
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
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.
Disqualifiers
Patients unwilling to sign consent.
Participants under the age of 18.
Trial population
Patients with Erdheim-Chester Disease and other HN will be enrolled in this registry study.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
500 Participants
are grouped into 1 trial groupGroup A: Patients with Erdheim-Chester Disease and Other Histiocytoses
Trial outcomes
Primary outcomes
1
Create registry for Erdheim-Chester Disease and Other Histiocytoses
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.
Time frame
3 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov