Digital Infuzion News

Friday, July 31, 2015

Digital Infuzion Announces Release of FOP Connection Registry

Fibrodysplasia Ossifican Progresssiva (FOP), is an extremely rare genetic disease that causes soft tissue to transform into bone, eventually encapsulating an individual in a second skeleton.

Digital Infuzion has provided a disease registry to the FOP community, sponsored by the International FOP Organization (IFOPA). The FOP Connection Registry, released in July 2015, is an international, observational, disease registry by and for the FOP community. This registry will help advance the development of therapies for people with FOP by organizing FOP researchers, empowering patients and physicians to share their experiences, and educating the international community about FOP.

The FOP Connection Registry software is implemented using Digital Infuzion’s N of 1 platform. Digital Infuzion’s N of 1 disease management analytics and electronic patient reported outcomes platform allows the IFOPA to capture not only patient-entered data, but also data from FOP physicians, including prospective clinical data, product outcomes data, and data aggregated from past studies.

“Having the opportunity to work directly with organizations seeking treatments and cures for rare diseases, we seek to give hope to families and those afflicted. A Registry brings disparate data surrounding the disease together, and enables analysis to provide treatment to those in need.”                -Rick Gadbois, Sr. Product Analyst at Digital Infuzion

Learn more about Digital Infuzion's N of 1 disease management analytics and electronic patient reported outcomes platform by clicking here


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