Bio-Linked is an electronic roster of people willing to help researchers find cures and treatments. You submit a confidential, self-managed profile of only the medical and social information you are willing to offer. This allows your participating blood center to then anonymously search to find people who meet research needs. Our updated website, bio-linked.org, has a detailed series of profile questions for registrants to answer. Our registrants are interested in research for cancer, diabetes, infectious disease, auto-immune disorders and more. In Oklahoma, diabetes and Alzheimer's research is being conducted right now utilizing participants from Bio-Linked, and more study participants are being sought. For potential participants, filling out the new BIOPROFILE is key, so that scientists can narrow or widen their search for study participants as necessary to conduct their clinical research. The questions within the bioprofile may change, so returning to update the bioprofile occasionally is recommended.
WHAT HAPPENS TO MY INFORMATION?
Your information is stored in a private, secure database used to locate people with specific medical, family and social backgrounds that match-up with research opportunities.
WHO CAN SEE MY INFORMATION?
Only you and a few restricted staff at our blood centers can see your answers. Your information will never, be shared with anyone else, unless you give written consent. You have trusted us as a blood donor, and we will never break that trust.
HOW WILL MY INFORMATION BE USED?
Scientists contact our blood center for help with clinical trials and basic research. The researchers are often looking for people with very specific conditions or symptoms. When a researcher contacts the blood center, we will search the Bio-Linked database to see if anyone matches the need. If an individual is a fit, we will contact that person and ask if he or she is interested in participating.
HOW CAN I OBTAIN MY HLA RESULTS?
If you have previously registered, you can request your HLA results by contacting our HLA administrations firstname.lastname@example.org. If you have not yet registered, you can become a life-saving participant by visiting Be The Match®.
WILL I EVER BE PRESSURED TO PARTICIPATE IN RESEARCH?
Absolutely not! If you match a researcher’s need, one of our staff will contact you. If you have any interest in participating, we will explain what is needed, and how that may affect you. The choice to move forward is completely yours. Unless you agree, the researcher will never know your identity.
WILL I EVER RECEIVE PAYMENT FOR PARTICIPATING?
Possibly, but each research project is different. Some, but not all have budgets for paying participants.
WHY IS MY BLOOD CENTER DOING THIS?
To expand our life-saving mission! There are more than 16,000 clinical studies occurring at any one time in the United States. These studies could provide cures or treatments for diseases that affect our friends and neighbors. This progress is often delayed many years because scientists cannot locate people to participate in their research. By helping researchers locate willing participants, we are doing our part in bringing new hope to patients as soon as possible.