Help a Coats’ Patient and High School student researcher to further his research on Coats’ Disease
The Jack McGovern Coats’ Disease Foundation is happy to support Coats’ patient and high school student John, who is participating in a three-year science program in which he is conducting original research under the direction of his science research advisor. John has chosen to study Coats’ Disease and contacted the Jack McGovern Coats’ Disease Foundation for assistance because the Foundation maintains the only Coats’ Disease Patient Registry in the world. The Coats’ Disease Patient Registry contains anonymized data that has been provided by patients and parents who completed the registry survey. The anonymized data is made available to researchers who are studying Coats’ Disease.
We encourage all Coats’ patients or their parents to participate in the study by completing a survey in which your responses will be anonymized and added to the Coats’ Disease Patient Registry data. John will receive anonymized raw data from the survey responses; no identifying patient data will be provided.
We hope you’ll take a few moments to complete the survey, Assessing Environmental Factors Related to the Onset of Coats’ Disease. In order to participate in this survey, you will need to login or create an account in the Coats’ Disease Patient Registry. (Those who have already registered may have already received an email from “CONNECT – Registry Coordinator coordinator@pin.invitae.com“). Please be assured that your information will remain confidential. You can create an account or log in here. Research will get us closer to finding a cure for Coats’ Disease so that John and other Coats’ patients do not have to live with Coats’ throughout their lives!
If you are not yet registered in the Coats’ Disease Patient Registry, this is an excellent opportunity to add your patient data so that the Registry is as robust as possible.
If you have questions, please do not hesitate to contact the Jack McGovern Coats’ Disease Foundation at contact@curecoats.org or you may contact his Science Research Advisor at coatssurveyquestions@gmail.com.
Thank you for participating!
