Celebrating One Year of Making a Difference

The FOP Registry is celebrating one year of making a difference today!

When we launched the FOP Registry’s patient portal on July 29, 2015, our goals were modest.  We hoped to begin 1_year_cupcake_and_candle_FOP_Connection.jpgassembling the unique stories of every individual living with FOP in order to better understand the disease characteristics and progression over time from the patient’s perspective. 

More specifically, the research objectives of the FOP Registry are:

  • to organize the international FOP community for potential participation in clinical trials or other research studies
  • to enable FOP patients worldwide to report data on their own disease state in a shared forum, ultimately empowering both individual patients and the community as a whole
  • to improve the collective understanding of FOP natural history and its functional, emotional, and psychological impact over time, and when treatments are available
  • to advance the understanding of FOP treatment outcomes

One short year later, and thanks to the commitment from the FOP community, the FOP Registry is well on its way toward achieving these objectives.  As of July 29, 2016, there are 178 individuals with FOP enrolled in the Registry from 28 countries.  We expect enrollment to increase rapidly as we introduce the Registry in several languages in the latter half of 2016 and into 2017. 

Aggregate patient data from the Registry was presented in IFOPA newsletters, as well as at several FOP patient meetings, including the Netherlands, Italy, the UK, and Australia.  We were also very excited to have the FOP community represented at two global medical meetings – the European Conference on Rare Diseases & Orphan Products (Edinburgh, Scotland) and the Bone Research Society (Liverpool, England) - with our first scientific posters of aggregate Registry data. 

Finally, the Registry continues to receive enthusiastic support from an international group of physician researchers and several biopharmaceutical companies that are now engaged in developing the next phase of the Registry – the medical portal, which, beginning in early 2017, will collect data from treating FOP physicians to confirm and compliment the data submitted by FOP patients in the patient portal.

Please join us in celebrating this series of small but significant successes in the FOP Registry’s first year!  Thank you to all from the FOP community who have already enrolled in the Registry and contributed your data.  Your efforts are so greatly appreciated.  If you have not yet enrolled, please go to fopregistry.org to register in order to help make our second year even more successful in advancing research in FOP.  Together, we can make a difference!

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