CSRF Patient Registry Advisory Committee |
Thank you for your commitment to patient-created research!
You've read the introduction page on our website and you're here to sign up. Awesome! We are very glad to have you.
In essence, we're asking for your voice telling your experience. Our combined experiences with this disease are what have mandated this registry into existence. When we all answer the same questions, a strong story emerges about global unmet needs, under-reported cases, delays to diagnosis, etc. We believe a registry like this can identify and quantify so much relevant data that can only be developed from our point of view.
This registry will be a validated scientific research vehicle built by us, with our priorities. Secondary to that is maintaining certain pieces of data that help the broad research and clinical specialist communities recognize what we're doing and then connect to ALL of our work! It will make it that much easier as we spread the message of earlier screening before the endo.
We're getting lots of help from NORD and several experts who are interested in what we're doing. This will be a long-time research project on which we hope lots of people will continue to participate throughout life. There's so much more to say but we can talk more on the intro call. If you have specific questions we can answer in the meantime, there is an open-ended question at the end of this survey.
Your time commitment is as your schedule allows. We have ten calls scheduled, and we do not expect you to attend every single one unless you choose to do that. We will communicate via email and shared Google Drive documents between now and the end of the year, in approximately the schedule outlined on the table at csrf.net/registrycommittee.