IFOPA Expands Registry Manager Role

Sammi Kile's role expands to include real-world evidence studies 


Sammi Kile joined the IFOPA in 2019 as the IFOPA's FOP Registry Project Manager. Her role has now been expanded to include not just the Registry but "real-world evidence" research projects as well.

Sammi will lead efforts to plan, design and execute observational research in the FOP community. Findings gained will inform stakeholders on important metrics including incidence, prevalence, burden of illness, natural history of disease and real-world outcomes.

"As FOP research and drug development advances, there is a growing need for more real-world evidence about the patient and family experience of living with FOP," said Michelle Davis, Executive Director of the IFOPA. "And not just through the Registry, but also using surveys, non-interventional studies, patient advisory boards, medical claims data and more. It is what the most sophisticated patient advocacy organizations are pursuing and the IFOPA is proud to join them."

In addition to her time spent with the IFOPA, Sammi has also worked with pharmaceutical and biotech companies on both pediatric and adult studies. With more than 11 years of clinical research experience, she brings a wealth of knowledge to her new role.

You can connect with Sammi Kile, Real-World Evidence Manager, at [email protected].

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