Learn How You Can Participate in the FOP Biobank
FOP researchers use biosamples (e.g. blood, urine, saliva and “baby teeth”) to make new discoveries in FOP, test new drugs, and look for new markers of disease. But a lack of freely available biosamples poses a challenge to advancing FOP research.
People with FOP, and anyone that supports FOP research (that means you family members), can overcome this challenge and help advance new research by donating biosamples to the IFOPA Biobank. One sample can help multiple researchers around the world.
Participating in the FOP Biobank is easy!
- Complete a Donor Contact Form along with an Informed Consent allowing your (or your child’s) sample to be used for broad research purposes.
- Once your Informed Consent is submitted electronically, a sample collection kit will be sent to your home, along with a Sample Collection Form and Donor Information Form to be completed prior to sending your sample back.
- Collect the sample according to the provided instructions.
- Send the sample(s) back using the enclosed prepaid shipping label along with the completed Sample Collection Form and Donor Information Form.
- You can donate more than once! In fact, the FOP Biobank is actively seeking individuals to donate multiple samples over a period of months and years.
- Children must be over the age of 4 in order to participate.
- If you are in a clinical trial, since there is an experimental drug in your system you aren't eligible to participate, but your family members still can.
- At this time, only US patients and families can participate. We hope to expand the Biobank internationally in the future.
SPONSORSHIP & ACKNOWLEDGEMENTS
The IFOPA oversees the FOP Biobank on behalf of the FOP research community thanks to generous support from Blueprint Medicines, Ipsen 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).