What is the FOP Biobank?
The IFOPA's FOP Biobank is a collection of tissues, DNA, blood and health information donated by people with FOP, their families and others. Donors' health information is de-identified to preserve their privacy. Qualified scientists can use these samples and data for research into factors that affect treatment and disease outcomes. By sharing portions of the samples and de-identified health information with many different labs, the IFOPA's FOP Biobank maximizes the impact from each donation.
People with FOP Have the Power to Advance Research
FOP researchers need biosamples (e.g. blood, urine, saliva or teeth) to make new discoveries, test new drugs, and look for new disease markers (called biomarkers) in FOP. However, very few samples are available. This is why we need you to donate biosamples to the IFOPA's FOP Biobank. Your de-identified samples will be shared with researchers across the world who are advancing the science around FOP.
Emory University is serving as the investigator for the IFOPA FOP Biobank, in collaboration with the University of California, San Francisco.
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. Important: If the tooth has already fallen out, please place it in cold milk and store it in a refrigerator (do not put the tooth in a freezer).
- 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 Emory University.
- 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 before 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. If the tooth falls out and your collection kit has not arrived, place the tooth in cold milk and store it in a refrigerator (do not put the tooth in a freezer).
- For teeth being removed during oral surgery, you should notify the FOP Biobank at [email protected] when your surgery is scheduled. A collection kit, including instructions, will be sent to you and we'll have you sign a form to release the teeth from the hospital's pathology department.
- For donating blood, collection kits will be sent to your home. You will need to schedule an appointment with a licensed physician or nurse to 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.
Frequently Asked Questions
Who can donate samples?
We need everyone's help and are prioritizing samples from adults with FOP and children that do NOT have FOP. Please feel free to reach out to friends and family members with children ages 4-18 who may be willing to donate freshly collected baby teeth, blood and urine samples. We also need repeat donors. If you've already donated, please consider donating again.
What samples can I donate?
The IFOPA Biobank is collecting saliva, urine, blood, and freshly collected teeth (baby teeth or teeth removed during oral surgery). You can choose to donate any combination of these that you are comfortable with.
Where do you need to live 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.
What should I do before my Biobank donation?
Stay hydrated. Please drink plenty of water in the 12 hours prior to your donation. This will make blood collection much easier.
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.
I've already donated to the Biobank. Should I donate again?
Yes! We strongly encourage repeat donations to the FOP Biobank. In fact, the more samples we get from one individual, the more valuable these samples become.
Who do I contact for more information?
For more information, please email [email protected].
ACKNOWLEDGEMENTS
The IFOPA oversees the FOP Biobank on behalf of the FOP research community.
We're grateful to 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) for their leadership in the design and launch of the FOP Biobank.
