The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance knowledge of ECD and its treatment. Read about the registry in detail below, including how to enroll.
Please note that by joining the ECD Patient Registry, you are NOT joining the ECD Global Alliance membership! If you are not yet a member of the ECDGA, please also join the ECDGA by following this link below. If you are already a member, please consider also joining the Registry.
To find out if you are eligible to participate in the ECD Patient Registry, follow this link.
About the Registry
The Erdheim-Chester Disease Registry, led by Memorial Sloan Kettering Cancer Center (MSK), unites leading researchers with people like you who are interested in taking part in building an informational database. The focus of this registry will be to help scientists advance our knowledge of ECD, how it affects the lives of patients, and how ECD treatments work. The ultimate goal – a cure!
Erdheim-Chester disease (ECD) is a rare disease that affects about 1,000 people worldwide. Because ECD is so rare, we are creating a patient registry to help gather information on ECD. A medical registry is a systematic collection of a clearly defined set of health and demographic data for patients with specific health problems, held in a central database for a predefined purpose. In the case of the ECD Registry, it will serve to increase knowledge about the condition and how it may be treated.
The focus is to understand more about what kinds of health problems are caused by ECD, what happens as a result of different treatments for ECD, and how ECD affects people’s feelings and attitudes. We 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 Erdheim-Chester disease and how they are treated for the disease.
Why join?
Scientists have made tremendous progress in the fight against the disease in just the past decade, and new studies launch every year. But researchers can’t do the work alone; they need information from people like you to conduct their research.
Memorial Sloan Kettering Cancer Center (MSK) serves as the trusted custodian of this centralized database and storage of samples. This data will be available to investigators studying the disease. The registry is designed to answer questions and provide information for investigators to find effective treatments.
The ECDGA is committed to continuing the registry’s management and funding so we can continue the growth of invaluable information this database will provide to the community.
How does the Registry work?
If you would like to participate in the Registry, the MSK team will request the following information to be sent from your doctor.
- Medical reports (doctor’s notes, laboratory and scan reports)
- If available, pieces from a prior biopsy or procedure will be collected and used for future research about ECD. You can still join the registry if you have not had a biopsy or if you do not want to send biopsy pieces to MSK.
- The Registry will also collect copies of any scans that you may have had in the past related to your disease, including MRI, PET, x-rays, or CT scans. You can still join the registry if you do not want to have scans sent to MSK.
There will be no cost to you for joining the registry. If you decide to participate in this research database, your part of the study will consist of completing surveys, also called questionnaires, about your symptoms and quality of life. Questionnaires for this study may be completed on the internet or on paper and mailed back to Memorial Sloan Kettering Cancer Center. If you choose to complete the surveys by paper, you will be provided with pre-paid postage so that you can mail the surveys back. Please find the online survey link below.
You will be asked to complete surveys when you join, after 6 months of joining, and yearly for 3 years. You will also be asked to complete the surveys if your ECD treatment changes for any reason.
How do I join the ECD Patient Registry?
If you are interested in learning more about this study, please contact the study team by phone or e-mail.
Phone (212) 610-0720
Fax (929) 321-1050
Email: neuECDRegistry@mskcc.org
You will have a chance to discuss the details of the study and to ask as many questions as you would like before making an informed decision as to whether you wish to participate.
If you decide to join the study, you will be provided an informed consent form giving you the details about the study in written form. Once you have read the consent form you may have additional questions you would like answered. Once all your questions have been answered to your satisfaction, you will be asked to sign the consent form.
If you complete the consent process by phone and sign a consent form that is mailed to you, then you will be provided a pre-paid envelope to mail your signed consent form back to the coordinator.
This consent process can be done over the phone or the Internet, eliminating the need for you to travel to MSK to join the study. To find out if you are eligible to participate in the ECD Patient Registry, follow this link.
ECD Patient Registry
Who can participate?
Anyone who has been diagnosed with ECD, and whose medical records are in English, can take part in the study. European law restricts the participation of individuals from some European countries.
You can join the registry even if you are not a patient at MSK.
Privacy and Confidentiality
Your privacy is very important to us and the researchers will make every effort to protect it. The trained staff at MSK may review your records if necessary.
If your information from this study is used in any reports or publications, your name or anything else that could identify you will not be used.
Your information may be given out if required by law. For example, certain states require doctors to report to health boards if they find a disease like tuberculosis. However, the researchers will do their best to make sure that any information that is released will not identify you.
Access to your protected health information will be limited to those listed in the Research Authorization form, which is a part of the informed consent process.
If I join the ECD Patient Registry, is this the same as joining the ECD Global Alliance?
No, the ECD Patient Registry is separate from the ECD Global Alliance. If you would like to join the ECD Global Alliance and become a member of our community, please follow the link below to register with the ECD Global Alliance. We hope that you will join both to help further research on ECD, however, this is voluntary and is your choice.
A close relationship between the patient community and the ECD Global Alliance allows easy promotion of patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. Being a registered member of the ECD Global Alliance allows you to be notified when new studies and treatments are available.
Here are more reasons to join the ECDGA!
- Empowerment: You don’t have to be a victim. You can make a difference.
- Meet Other People: Cut through the isolation and make new friends.
- Find the Latest Treatment Information: New treatments, tips, and information are available from the organization and its members.
- Have Fun: Be around people who “get it” and find ways to incorporate what you love into helping find a cure.
- Gain New Skills: Volunteer opportunities are limitless.
- Set an Example: Show others what can be done and how hard work helps to “manage problems.”
- Get Access to Experts: Access to ECD experts is available through the organization.
Join the ECDGA
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