As the FD/MAS community continues to share their stories and medical experiences through the FD/MAS Patient Registry, the Registry is now large enough to power academic research. “Participants have contributed over 100,000 data points by filling out the surveys on fdmasregistry.org,” said Deanna Portero, FDF Executive Director, “All that patient-provided data offers a wealth of information for researchers to analyze, and could lead to new and useful insights into FD/MAS.”
To help initiate new academic studies, the FDF is announcing an open call for researcher applications for use of the FD/MAS registry. “We’re in the process of contacting over 300 researchers who have already published in some capacity on FD/MAS and invited them to make use of this incredible resource,” said Portero. Researchers will receive a letter from the Foundation and an infographic that shares the power of the patient cohort that make up the Registry. “The registry really is a one of a kind resource,” says Portero, “with over 500 patients who are interested in participating in additional studies, and 300 patients providing survey data, the FD/MAS Patient Registry is one of the richest FD/MAS research resources in the world.”
”High profile FD/MAS researchers have already been in touch to let us know that they will be filing applications for data access,” continued Portero. “We hope to see the first papers based on registry data submitted for publication within the next 12 months, and we expect registry data to power research studies for years to come. The beauty of the registry is that when an FD/MAS patient completes a survey, that information can be used and reused in multiple studies. By dedicating an afternoon to participate in this one study, a patient’s story can help power many studies for years to come.”
This researcher outreach initiative was made possible by the dedication of our Spring Semester Research Intern Chidi Ezeonyebuchi and many volunteers, including Brittany Anderson, and the University of California, Berkeley’s American Bone Health club, led by undergraduate Amy Fann. Not only did Ezeonyebuchi design and create the Registry infographic, he also spent the spring engaging with Registry participants and encouraging them to keep working on their surveys. Ezeonyebuchi graduated this spring from University of Maryland and plans to apply to medical school in the near future.
Community member Brittany Anderson and volunteers from the American Bone Health club at UC Berkeley helped FDF research contact information for over 100 researchers who had published on FD/MAS but were not previously in touch with the Foundation.
The Fibrous Dysplasia Foundation is grateful for all of the volunteer work that allows the FD/MAS Patient Registry to thrive, including the assistance of the members of the FD/MAS Registry Steering Committee, the group that carefully reviews researchers requests to use the registry. This volunteer committee include researchers Alison Boyce MD, Andrea Burke DMD, MD, and Amanda Konradi PhD, and and FD/MAS community members Cindi Brandt Levin, Catherine Fairchild, and Kiran Murty.