At JMCDF, our mission is to enable new insights into the study of Coats’ Disease as we continue to push the ball forward towards finding a cure. Over the past 10 years, we have learned a lot about the medical research community and understand some of the challenges researchers face when looking to study the disease.
One critical challenge: Because Coats’ Disease is so rare, it’s nearly impossible to find enough correctly diagnosed patients to participate in medical research.
That’s why we are creating the first and only Coats’ Disease Patient Registry, so medical researchers will be able to tap a pool of 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.
Click here to register: http://www.coatsdiseaseregistry.com/
Frequently Asked Questions
What exactly is a Patient Registry? A patient registry is a place where medical information, family history and other related information from patients is collected and stored for potential medical research. The purpose of the Jack McGovern Coats’ Disease Foundation (JMCDF) registry is to collect information from individuals with the same disease. By opting in to provide your 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 disease and about you. 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 and every year, you may be asked to update any of your answers. If you would like to be considered for clinical trials or other research studies, you can choose to be contacted, should these studies arise. 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. 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 Suzanne Levere at Jack McGovern Coats’ Disease Foundation directly at [email protected]