Last month, FDF celebrated Registry Week in honor of the 2nd anniversary of the launch of the FD/MAS Patient Registry. The 2nd anniversary is more than a symbolic landmark: it was the first “longitudinal interval,” or the first time that study participants were asked to update their information so that researchers are able to study how FD/MAS affects people over time. Registry participants were encouraged to return to the Registry to complete their surveys, as well as complete longitudinal survey retakes and survey updates. “The Registry has already gathered positive attention from the research community and the more complete data each participant provides, the more powerful that data will be in future studies,” explained Deanna Portero, FDF’s Executive Director.
The show of enthusiasm from the FD/MAS community for this research project has been overwhelmingly positive. Over the course of Registry Week, Registry participants submitted over 1,000 surveys and 123 new participants joined the study. By the end of Registry Week, 169 participants had completed the project baseline, which means they had completed all of their Registry surveys. “We need as many people as possible to achieve this level of study participation.” said Portero, “Researchers often need participants to answer several different questions across many surveys in order to include participants in their follow-up studies, which is why filling out every survey may make the difference between a participant’s data being included in a study or not.”
In addition to completing the baseline, many participants also completed survey retakes and updates during Registry Week. This is an important step for a longitudinal study like the FD/MAS Patient Registry, which charts the change in a disease over time. For example, the study asks that participants retake their pain survey every two years to remain up to date in the Registry. “Pain is something that can change a lot over the course of a patient’s life.” explained Dr. Alison Boyce, a researcher at the NIH and a member of the FD/MAS Patient Registry oversight committee. “In order to really understand pain and better ways to treat the pain, we really need patients to come back and update their data.”
FDF is thanking participants who have completed their surveys by sending them an FD/MAS Toolkit, a resource for managing FD/MAS that was designed in collaboration with patients, caregivers, and clinical experts. There are still some toolkits available, and FDF will continue to mail these to qualified participants while supplies last.
While Registry Week has come to an end, the FD/MAS Patient Registry remains open and active, gathering and distributing more data every day. The power and promise of this study is evident when examining the immediate interest it has gathered from the research community. Already six different research teams have submitted proposals that would use the FD/MAS Patient Registry data for research. These researchers are seeking help recruiting appropriate participants, supporting grant applications for outside funding opportunities, collaborating with other researchers to develop research networks, and of course, analyzing Registry data. Their projects could help us understand treatment options better and may change how we view medical procedures for FD/MAS. Their work is just the start of what the Registry could help this community discover.