Registry for Patients With Erdheim-Chester Disease
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT03329274|
Recruitment Status : Recruiting
First Posted : November 1, 2017
Last Update Posted : September 25, 2020
The investigators want to understand more about what kinds of health problems are caused by Erdheim-Chester Disease (ECD), what happens as a result of different treatments for ECD, 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 ECD. To try to figure this out, doctors would like to collect information about people who have ECD 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.
|Condition or disease|
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||250 participants|
|Target Follow-Up Duration:||3 Years|
|Official Title:||Registry for Patients With Erdheim-Chester Disease|
|Actual Study Start Date :||October 26, 2017|
|Estimated Primary Completion Date :||October 2021|
|Estimated Study Completion Date :||October 2021|
|Patients with Erdheim-Chester Disease|
- Create registry for Erdheim-Chester Disease [ Time Frame: 3 years ]This ECD registry is motivated to capture comprehensive clinical information as well as patient-centered data about ECD patients.
Biospecimen Retention: Samples Without DNA
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03329274
|Contact: Eli Diamond, MDfirstname.lastname@example.org|
|Contact: Katherine Panageas, PhD||646-888-8237|
|United States, New York|
|Memoral Sloan Kettering Cancer Center||Recruiting|
|New York, New York, United States, 10065|
|Contact: Eli Diamond, PhD 212-610-0243|
|Contact: Katherine Panageas, MD 646-888-8237|
|Principal Investigator: Eli Diamond, MD|
|Principal Investigator:||Eli Diamond, MD||Memorial Sloan Kettering Cancer Center|