What is a Biobank?
The IFOPA's FOP Biobank is a centralized collection of tissue and blood donated by people with FOP, their families and anyone else, to be used for FOP research by qualified scientists around the world. Additionally, the IFOPA Biobank collects clinical information from people with FOP to enable research into factors that affect treatment and outcomes. By sharing portions of the samples and the anonymous health information with many different labs around the world, the IFOPA Biobank maximizes the impact from each donation.
People with FOP Have the Power to Advance Research
FOP researchers use biosamples (e.g. blood, urine, saliva or “baby teeth”) to make new discoveries in FOP, to test new drugs, and to look for new markers of disease called “biomarkers.” However, a lack of freely available samples poses a challenge to advancing FOP research. People with FOP, and anyone that supports FOP research, can overcome this challenge and help advance new research by donating biosamples to the IFOPA Biobank. Your de-identified samples will be shared with researchers across the world who are advancing the science around FOP.
How Can I Participate in the IFOPA FOP Biobank?
Participating in the FOP Biobank is straightforward. If you are interested in contributing to the IFOPA Biobank, please follow these 4 steps:
- Complete a Donor Contact Form along with an Informed Consent allowing your (or your child’s) sample to be used for broad research purposes. You can complete the Contact Form and the Informed Consent through the Vanderbilt Center for Bone Biology website. Note: Children must be over the age of 4 in order to participate.
- 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.
- For urine and/or saliva donation, collection tubes and instructions will be provided on how to collect and repackage these samples.
- For baby (i.e. deciduous) teeth donation, you should notify the FOP Biobank at [email protected] when you or your child notices a loose tooth. A collection kit, including instructions, will be sent to your home prior to the tooth falling out. You will collect and package the tooth once it naturally falls out.
- For donating blood, collection kits will be sent to your physician’s office. You will need to schedule an appointment with the physician who will perform the blood draw.
- Send the sample(s) back, along with the completed Sample Collection Form and Donor Information Form to the IFOPA Biobank, hosted by Vanderbilt, using the enclosed pre-paid shipping label. For blood donations, your physician will complete the Sample Collection Form and will return the blood sample to the IFOPA Biobank using the enclosed pre-paid shipping label.
Frequently Asked Questions
Who can donate samples?
Anyone over the age of 4 can donate. We need samples from FOP patients, family members and non-related volunteers to make the Biobank as valuable as possible. We also need repeat donors, so please consider donating in the future as well.
What samples can I donate?
The IFOPA Biobank is collecting saliva, urine, blood, and deciduous ("baby") teeth. You can choose to donate any combination of these that you are comfortable with.
Where do you need to live in order to donate to the IFOPA Biobank?
Currently, the FOP Biobank is open only to people who live in the United States. However, the IFOPA is exploring options so that individuals from other countries are also able to participate in the Biobank. This takes coordinating with international labs as well as ensuring donated samples can be correctly collected and securely shipped to the Biobank.
How will the samples be used?
Your samples and others will be used to create a collection of samples called a "biobank." These samples will be linked with anonymous information from the Health History Questionnaire to help researchers studying the genetic or other individual differences among people with and without FOP.
Any researcher at a university or a health care/pharmaceutical company can apply to use portions of the samples for their research. Your identity or identifying information (e.g. address, phone, email, etc.) will NOT be given to the researchers. To promote fair and optimal use of the samples, a committee of expert physicians, scientists, and FOP advocates will review the research requests to decide which projects may use the samples.
Will my personal information be shared with anyone? How will my personal information be protected?
NO, your personal information will NOT be shared with anyone other than the investigators overseeing the Biobank. Your information will be stored in a secure database that can only be accessed by designated study investigators (currently limited to Dr. Dan Perrien). Researchers requesting to use the samples will NOT have access to your identity or identifying information.
Can I choose not to participate after I've submitted a sample? If so, what will happen to my sample?
Yes, when the Biobank receives your written request to leave the study (email is acceptable), all your samples in the Biobank will be destroyed. However, any data that was generated before receiving your request will remain in the system.
Who do I contact for more information?
For more information, please email [email protected].
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).