October 27th to November 5th
Registry Week is our way of celebrating year 2 of the FD/MAS Patient Registry, the largest cohort of FD/MAS patients worldwide.
The Registry can be an invaluable resource for patients and researchers who are interested in advancing treatment options for FD/MAS. But the tool is only as strong as the data you share. That’s why we’re inviting you to help us!
How Can I Participate in Registry Week?
Help us celebrate by visiting the Registry and completing a survey! The Registry data is most useful when participants provide a full picture of their medical history and experiences.
- Sign in to the FD/MAS Patient Registry and select your Registry Participant
- Go to “Initial Surveys” –make sure you’ve taken all surveys! (pst: we’ve added another!)
- Go to “Surveys to Retake”–Take both surveys here!
- Go to “Updatable” –make sure you note any new fractures, surgeries, or other changes that may have occurred in the last two years.
Why the Surveys are Important
Each survey you complete gives us a clearer picture of FD/MAS and provides more data for scientists to analyze and understand this disease better.
When you complete ALL your surveys, researchers can look at the full picture. The more patients that complete their surveys, the more valuable the data becomes, and the more likely scientists will be able to find new answers to patients’ most pressing questions.
There’s a Take Home Gift!
If advancing science isn’t enough for you, we’ve got a gift! Any Registry participant that completes all their surveys and is in good standing with the FD/MAS Patient Registry will receive an FD/MAS Toolkit. Learn more about this resource here.
Registry Week Online and in the Community
Between October 27th and November 5th, 2018 we’ll be celebrating Registry Week and we hope you will too. Be on the lookout for new content on our Facebook page, Twitter, and on the Registry News page.