Registry participation is encouraged to help advance FOP research
Each year Global Genes hosts the RARE Drug Development Symposium, a research symposium focused on the latest topics covering rare disease research and drug development. This year’s symposium was held in Philadelphia, Pennsylvania, USA, on June 6-7, 2019.
IFOPA’s Director of Research Development and Partnerships Adam Sherman presented a poster at the symposium highlighting our FOP Registry. Contributing authors to the poster also included Dr. Fred Kaplan, Dr. Robert Pignolo, Kin Cheung (IFOPA registry statistician) and Mary Anne Fitzpatrick (IFOPA registry director). Also in attendance at the Symposium was Kyle Wallace who serves on the IFOPA's Research Committee.
Disease registries play an important role in rare diseases by collecting important medical information that can be used by researchers, drug developers and regulators. Thanks to the incredible participation from the FOP community – over 40% of all known FOP’ers are participating – our FOP Registry is off to a tremendous start! By analyzing the data in our Registry, we are starting to gain important new insights into FOP. The Global Gene’s poster is just one example of the type of information that can be learned from our Registry. Additional scientific publications from the FOP Registry, which will be communicated to the research and medical community, are planned for later this year.
To sign up for the FOP Registry and contribute to this important study. The FOP Registry is available in English, French, German, Italian, Portuguese, Russian and Spanish so FOP patients from around the world can participate.
Click on the poster below for the full PDF.