More is being learned about FOP since FOP Registry participation has increased
In October, the IFOPA launched the FOP Registry Rewards Program. This program rewards new and existing FOP Registry participants with a $25 Visa gift card when they submit their completed Enrollment and Follow-up Surveys. The goals of this program are not only to thank Registry participants for the time and effort they put into completing their Registry surveys, but to also increase the number of surveys in the Registry, which will ultimately help researchers better understand FOP.
Since the inception of the Registry Rewards program in October, the number of Enrollment Surveys submitted increased from 276 in October to 297 in December. Enrollment Surveys provide important information about a patient’s FOP diagnosis and FOP history, which is essential to understanding the FOP patient’s journey.
Once an Enrollment Survey is submitted, the Registry participant will receive Follow-up Surveys by email every 6 months. These surveys help researchers understand how FOP progresses over time. The value of the FOP Registry is in its longitudinal design. In longitudinal studies, repeated observations of the same variables are captured over time. FOP Registry participants are reminded of their upcoming and open Follow-up Survey through email, and they have 30 days to complete it before it closes.
Prior to October 1 when the Registry Rewards program began, 38% of Follow-up Surveys weren't completed. After we implemented Registry Rewards, that number dropped to 11% in October, 4.5% in November, and in December every single eligible person completed their Follow-up Survey.
We are grateful to each of you who have fully enrolled in the FOP Registry and are completing your Follow-up Surveys. You are making important contributions to FOP research!
Many thanks to the FOP Registry Advisory Boards for their help in creating the Rewards Program. Thank you to our Registry sponsors – Ipsen, Regeneron Pharmaceuticals and Blueprint Medicines.
Get your Rewards Program questions answered.
