Are you a part of the ECD Patient Registry?

Did you know that it is extremely important to take part in such a registry?

Understanding every aspect of trials, registries, or simply getting treatment for a rare disease can be overwhelming. Let us help explain the importance of a patient registry, and why you should consider being a participant. 

What is a Patient Registry?

Definition: An organized system that uses observational methods to collect data and evaluate specified outcomes for a population defined by a particular disease.

A patient registry can be a powerful tool to observe the course of disease; to understand variations in treatment and outcomes; to examine factors that influence prognosis and quality of life; to describe care patterns, including appropriateness of care and disparities in the delivery of care; to assess effectiveness; to monitor safety and harm; and to measure quality of care. Through functionalities such as feedback of data, registries are also being used to study quality improvement.

In short, it’s a collection of information (from patients’ medical history) used to answer unknown questions, and further research on a specific disease.

Why is it important to participate?

First, it is particularly important for patients to understand that registries are considered “minimal risk” because they are merely sharing information about human subjects; they are not actually testing the patient or conducting medical procedures.

For years, healthcare providers have based their care for patients upon clinical trials that provide data about treatment effects in controlled conditions. While these data are reliable and necessary, they often are not applicable to the diverse population, which can result in evidence gaps. Evidence gaps can impede the ability of patients and providers to make informed decisions. Therefore, to care for their patients based on real-world results, healthcare professionals are now focusing on evidence-based medicine, which is what patient registries provide.

It is important to understand, patient registry participation is available at no cost to the patient. There are no travel requirements. Typically, their will only be the time commitment to provide consent for inclusion and medical records, surveys, and other possible information.

For more information about the ECD Patient Registry at Memorial Sloan Kettering Cancer Center visit our website here ECD Patient Registry, or contact the study team by phone or e-mail.

• Phone: (212) 610-0720
• Email: neuECDRegistry@mskcc.org

For more information about patient registries, why they are important, and other active registry examples: https://www.ncbi.nlm.nih.gov/books/NBK208643/.

For more information on other studies and trials for Erdheim-Chester Disease patients: Studies & Trials.

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. Follow our membership link to join the ECD Global Alliance: JOIN US.