The FD/MAS Patient Registry is turning 2 on Wednesday, October 31st and we’re celebrating big with Registry Week! Since the Registry launched in 2016, 680 patients and caregivers have signed up to be a part of this study and contributed over 100,000 data points. That’s 100,000 ways that scientists and researchers can learn more about this disease.
Several groups of scientists have proposed projects that will draw on data that Registry participants have shared in the FD/MAS Patient Registry. To conduct their studies, they need more people to complete the surveys, and for everyone who completed their surveys to come back and share how your condition has changed or stayed the same. These Registry studies could lead to better treatment guidelines and a new understanding of what medical procedures make a real difference in patient lives. The work of these researchers is just the beginning; they need YOUR story to power research.
We’ve made a lot of progress in two years, but we can’t stop now.
We’re celebrating Registry Week from October 27th to November 5th with new FD/MAS content, and a brand new Registry survey. Help us celebrate by signing in to the Registry and completing and updating your surveys!
While 318 patients have completed at least 1 survey in the Registry, only a portion of these participants have completed all their Registry surveys. When a participant completes all their surveys, scientists are able to see the most full and complete picture of their disease experience. That’s why we’re asking you to celebrate Registry Week with us by visiting the Registry and sharing your story.
Throughout Registry Week, there will be videos, news articles, and a take home prize for anyone who completes all their surveys! Get started on your Registry surveys now and stay tuned for more Registry Week info!