FOP Biobank

The International FOP Association (IFOPA) maintains a FOP biobank on behalf of the FOP research community. Donated samples from people with FOP, and from control donors, are stored in the Biobank at Vanderbilt University Medical Center for redistribution and use by academic and industry researchers. It is the IFOPA’s goal to place these samples into the labs of qualified researchers who will further our knowledge about FOP and accelerate the development of new treatments. 

Available Samples 

View the list of available samples. 
 
Samples are being added to the FOP Biobank on a continual basis. Please check back to view the latest available samples.

The Acquisition Process 

To acquire biospecimens from the FOP Biobank, please complete a FOP Biobank Request Form. The Request Form will be reviewed by a Scientific Review Committee for scientific merit, research impact, feasibility and availability of appropriate biosamples.
 
Approved applicants will be sent a Uniform Biological Material Transfer Agreement (UBMTA) that must be signed by the principal investigator (PI) and receiving institution prior to sample release. The PI is responsible for obtaining any necessary Institutional Review Board (IRB) approvals or waivers, as required by their institution. 
 
Once all documents are received by the IFOPA, the FOP Biobank will be notified of the aliquots to be shipped and will communicate directly with the PI to coordinate delivery. As part of the UBMTA, investigators will be required to provide a final scientific report or a publication to the IFOPA and notify the IFOPA of any additional publications.

Partnering Opportunities 

The IFOPA welcomes the opportunity to partner with sponsors of clinical trials or research studies to collect biosamples and donate the materials to the FOP Biobank. These biosamples will be made available for access to qualified researchers and distribution governed through a Scientific Review Committee. Please contact Adam Sherman if you are interested in partnering with the IFOPA. 
 

Acknowledgments & Sponsorship 

The IFOPA oversees the FOP Biobank on behalf of the FOP research community and thanks to generous support from Blueprint Medicines, Clementia, an Ipsen company, and Regeneron Pharmaceuticals.
  
We thank the invaluable in-kind support that has been provided by Margo Black (Vanderbilt University) and Drs. Charles Hong (University of Maryland), Ed Hsiao (University of California, San Francisco), Dan Perrien (Emory University), Bob Pignolo (Mayo Clinic), Eileen Shore (University of Pennsylvania), and Yan Ru Su (Vanderbilt University).  

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter