Launched in 2018, the Gorlin Syndrome Alliance Patient Registry provides medical researchers with the data they need to find better treatments and eventually a cure for Gorlin syndrome.
What is a patient registry?
A patient registry is a collection of information about people with a specific condition or disease. The information is provided on a voluntary basis by the people affected.
The goal of a patient registry is to fill gaps in knowledge about a particular disease and may contain personal, medical, social, and financial data. Registries are sponsored by government agencies, nonprofit organizations, health care facilities, or a private companies.
Why should I participate in the GSA Patient Registry?
Have you ever wished for a better treatment for Gorlin syndrome? Are you sometimes disappointed with how slow research moves?
By participating in the GSA patient registry, you are directly helping accelerate the pace of research. And more research leads to better treatments and a cure for Gorlin syndrome.
Your data along with the data of others in the Gorlin syndrome community will be used by research scientists to work toward medical breakthroughs.
What can I expect when I enroll in the GSA Patient Registry?
It takes about 20 minutes to register for the GSA patient registry. You will be asked to answer general questions about your diagnosis and which symptoms/manifestations of the syndrome have affected you.
Next, you will be asked to complete a second set of questions that focus on your symptoms/manifestations and the medical procedures you’ve had to treat them. This part will take you about 40-60 minutes to complete, depending on how involved your treatments and experiences have been. It will be helpful to have your medical records accessible during this time. You can complete these questions at different times and in multiple sittings, if needed.
It is important for you to complete all the sections to allow researchers to have the most comprehensive set of data as possible.
Who will have access to the information I provide?
You have full control of who sees your information. You can choose to share health data completely anonymously or provide your name and contact information. You also can choose to share your responses with the Gorlin Syndrome Alliance only, or with researchers affiliated with GSA.
The registry will prompt to you select your privacy and data sharing settings.
Enroll now in the GSA Patient Registry and help speed up the pace of research toward better treatments and a cure for people with Gorlin syndrome.