The Center for Research in FOP & Related Disorders at University of Pennsylvania

FOP Research Laboratory 

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About the Center

The IFOPA maintains a longstanding collaboration with the University of Pennsylvania. In 1989, Jeannie Peeper, founder of the IFOPA, collaborated with Drs. Michael Zasloff and Frederick Kaplan at the University of Pennsylvania to initiate the FOP Collaborative Research Project. In 1991, The FOP Laboratory at The University of Pennsylvania was founded by Eileen Shore, PhD and Frederick Kaplan, MD and, in 1997, The Center for Research in FOP and Related Disorders was established by Drs. Kaplan and Shore, with the generous support of The Cali Family.About the Center

Today, the Center is led by Drs. Kaplan and Shore who work together with many post-doctoral fellows, scientists, students and staff. This core team collaborates with physicians and scientists worldwide to develop treatments and -- someday -- a cure for FOP. Meet the team here

The Center for Research in FOP & Related Disorders is the world’s first and only comprehensive research program in FOP. The activities of The Center are broad and comprehensive and focused on seven spheres of activity:

1) Clinical Care and Consultation Worldwide

  • Guide patients, families and doctors worldwide in their daily battles with FOP.
  • Direct the world’s current and historically largest FOP clinic and referral center, now in its new home at Penn Medicine - University City, Philadelphia, Pennsylvania.
  • Coordinate medical management and dental care of FOP patients worldwide.
  • Conduct international FOP clinics for patients and families

2) Clinical Research and Infrastructure Development

3) Basic Research (Identification of Therapeutic Targets)

4) Translational Research (Preclinical Drug Testing & Biomarker Discovery Program)

5) Developmental Grants Program

6) Clinical Trial Development and Proof-of-Principle Investigation in Patients

7) Clinical and Basic Education Worldwide

Since it was established, The Center for Research in FOP & Related Disorders has had a singular mission: to determine the cause of FOP and to use that knowledge to advance the treatment and a cure for FOP. During the past twenty-four years, we moved from the wastelands of a rare disease to the watershed of clinical trials. We identified the genetic cause of FOP and used that knowledge to spearhead worldwide research efforts to develop therapies that will transform the care of individuals with FOP.

In partnership with our benefactors, we have expanded the frontiers of discovery and drug development in this rare and catastrophically disabling condition, dismantled the physical and perceptual barriers that have impeded progress, and inspired global research in small molecules, antibodies, and gene therapy for FOP. The Center for Research in FOP & Related Disorders has provided the infrastructure of flexibility and intellectual space needed for serendipity and continuity.

Notably, our team was responsible for pinpointing a single gene mutation -- one letter out of six billion in the human genome -- that causes the runaway bone growth of FOP. This groundbreaking discovery is being used to unlock the mysteries of FOP. Meet the researcher who discovered the FOP gene

The Center’s seminal work has been highlighted in many prestigious medical publications, including the New England Journal of Medicine, Science, Nature, Nature Genetics, Nature Medicine, The Journal of Clinical Investigation, Scientific American, The Journal of Bone and Mineral Research, Human Pathology, Stem Cells, Gene Therapy, The Journal of Neurology, Pediatrics,The Journal of Bone and Joint Surgery, and Clinical Orthopaedics and Related Research.  The work of The Center has received widespread international acclaim in feature articles in The Atlantic Monthly, Newsweek, Der Spiegel, USA Today, National Geographic and The New York Times, as well as feature documentaries on The BBC, ABC, NBC, CNN and The National Geographic Channel.

Funding for FOP research at the Center is supported by endowments from the Cali, Weldon and Weiss families, and by the National Institutes of Health, the IFOPA, and by FOP families worldwide, their friends, and their communities. FOP research is a team effort that could not take place without the complementary expertise and efforts of all involved.  

Funding by the International FOP Association

Since 1990, the IFOPA has provided grant funding to the University of Pennsylvania. Today, funding for the Center for Research in FOP and Related Disorders is the IFOPA's greatest investment and includes a three-year funding commitment. Each year the IFOPA's Research Committee meets with the UPenn research team to learn about the findings of that year's grant-funded projects and the research projects UPenn is planning for the coming year. At various times throughout the year, Drs. Kaplan and Shore also make presentations to the IFOPA's Board of Directors. 

The Center for Research in FOP and Related Disorders shares a message of appreciation for recent grant funding from the IFOPA

2017 Funding

2016 Funding

Tooth Ferry Program

The University of Pennsylvania is conducting a series of studies using cells from baby teeth as a model to examine how FOP functions at a cellular level. Learn more here

Opportunities for Collaboration

Drs. Kaplan and Shore are committed to the concept that a multi-faceted approach to FOP will provide the best opportunities for understanding this condition and for developing treatments and cures. This has been a longstanding principle for the Center and they continue to welcome and encourage collaborations with investigators with a range of expertise and perspectives. Please contact them at any time with questions, ideas, collaborative proposals.

Over the years, the University of Pennsylvania has collected a number of FOP specimens, including LCLs. Researchers interested in collaborating in research utilizing these samples can contact Drs. Kaplan or Shore to discuss.

25th Annual Report of the FOP Collaborative Research Project

The Annual Reports of the FOP Collaborative Research Project offers a comprehensive look at how the FOP research effort has evolved over the course of a year. They include reports of specific experiments conducted, as well as overviews of future experiments and overall dealings in the Lab itself.

The IFOPA is pleased to share "The Twenty-Fifth Annual Report of the Fibrodysplasia Ossificans Progressiva (FOP) Collaborative Research Project" by Drs. Frederick Kaplan, Robert Pignolo and Eileen Shore. Download the report for the best interactive reading experience. Download the Twenty-Fifth Annual Report of the FOP Collaborative Research Project (in PDF format). 

Click here to see previous annual reports, including select reports in languages besides English. 

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