FDF Prepares for Patient Registry Launch

Pictured Left to Right (Back Row): Jacki Jackson-IU, Dr. Alison Boyce-NIH, Shauna Wagner-Parkview Health, Justin Heral-I.P.F.W., Julie Hughbanks-Parkview Health, David Burr-IU, Dr. Michael Mirro-Parkview Health, (Front Row): Dr. Andrea Burke-NIH, Amanda Konradi-FDF, Jen Coleman-FDF, Lisa Heral-Parkview Health/FDF, Jaqui Kraska-NORD, Deanna Portero-FDF, Zoe Slutzky-Patient.

Meeting on September 18th, 2015 at the Parkview Mirro Center for Research and Innovation.

Patients, Caregivers, Clinicians and Researchers came together for a full day to share knowledge and discover ways to approach building the FD/MAS patient registry. The project, Bridging Rare Disease Patients and Data through Novel Research Partnerships, is committed to building an online hub to support patients and the community that serves them with tools and relevant information to support clinical effectiveness research (CER) in the future. Our goal is to provide evidence based information to patients and the community that serves them, to enable patient centric, informed decisions about their healthcare.

Learn more about about the patient registry project, by visiting the working group website, which contains information about the team, and the goals of the project.