Help us build the first and only Coats’ Disease Patient Registry
Our mission is to facilitate research that leads to new insights about Coats’ Disease as we continue to push forward to find a cure. Since 2006, we have learned a lot about the medical research community and some of the challenges Coats’ Disease researchers face.
One critical challenge: Because Coats’ Disease is so rare, it’s very difficult to find enough correctly diagnosed patients to participate in medical research. That’s why we created the first and only Coats’ Disease Patient Registry, so medical researchers will be able to tap into a pool of anonymized data on Coats’ Disease patients for their work.
Have you ever wanted to participate in clinical trials for Coats’ Disease treatments or research? Signing up for the patient registry is the first step.
Frequently Asked Questions
What exactly is a Patient Registry?
A patient registry is a place where information about the disease, family history, and other related information from patients is collected and stored for potential medical research. The data is anonymized to protect the privacy of individual patients. The purpose of the Jack McGovern Coats’ Disease Foundation’s registry is to collect information from individuals with the same disease. By opting in to provide your or your child’s (if you are a Coats’ parent) information, you help the Coats’ Disease community gain knowledge, facilitate research, and make strides towards understanding the disease, finding better treatments, and, ultimately, a cure. Information provided by patients may be used for medical research and experimental clinical studies to better understand Coats’ Disease.
What does participation entail?
The survey will ask a few questions about your or your child’s disease and about you or your child. The survey is available at coatsdiseaseregistry.com. Once you have a chance to read through the agreement process and consent to participate, you will complete the short survey. You may be asked to update any of your answers in subsequent years. If you would like to be considered for clinical trials or other research studies, you can choose to be contacted. If you do not want to be contacted by researchers, you can opt-out.
Will my information be public?
Your contact information will not be open to the public. The Coats’ Disease Patient Registry is hosted by a professional registry service that specializes in disease data collection and is highly secure. Researchers will only be able to reach out to you after they are approved through the system and can only contact you depending on the preferences you set in the survey. For more information about this opportunity, check out the registry website at coatsdiseaseregistry.com or contact the Jack McGovern Coats’ Disease Foundation directly here.
Currently, the Coats’ Disease Patient Registry contains data from 460 patients. To give researchers the best chance at learning more about this rare disease, we need to build this database and hope you’ll consider becoming part of this crucial resource!
Current Registry Facts