Consent. Participate. Improve Health for All.
Transforming the path from data to discovery begins with you. As a participant, you join a growing community dedicated to advancing health and unlocking new opportunities for research and innovation that could positively impact your own health.
PARTICIPATION WORKS:
How Participation Works.
The participant portal is currently under development. Complete the interest form, and an Indiana Biobank team member will contact you when the portal is available to consent and join.
Express your interest in participating. An Indiana Biobank team member will contact you when the participant portal is available to create an account and consent.
Review the participation information provided by Indiana Biobank. This will explain what participation means, how consent works, and how your information may be used for approved research. If you have questions before participating, reach out to the Indiana Biobank.
Provide consent to participate. Your health information, along with thousands of others, can now be used to propel health research.
As a participant, you may receive updates, follow-up surveys, or be contacted if you are eligible for a research or clinical trial. Next steps may vary depending on current research projects, participating health systems, sample collection needs, and eligibility.
Your Participation
Moves Research Forward.
Helps researchers better understand how diseases develop, progress, and respond to treatment that could directly impact your health outcomes, as well as others.
Your participation provides researchers with a fuller picture of our population for more diverse research.
You may be contacted to participate in clinical trials and other studies that could directly impact a researcher’s next health breakthrough.
Ready to Participate?
Tomorrow’s life-changing breakthroughs in health start with your participation today. Become part of a growing community to help us improve health for all.
*You may be contacted about relevant research opportunities in the future, but participation does not guarantee direct personal benefit or clinical trial enrollment.
*You may be contacted about relevant research opportunities in the future, but participation does not guarantee direct personal benefit or clinical trial enrollment.
Your Trust Matters Most.
Who is eligible to participate?
We are striving to expand participation across health networks for your convenience. At this time, all patients who receive care at IU Health hospitals and associated clinics are eligible to participate through the Indiana Biobank.
What are the benefits of participating?
Joining Provena Consortium, powered by the Indiana Biobank, helps researchers find better treatments for serious diseases of today and the future, tailored to individuals based on their DNA or genetic information. By providing a biological sample, participants will be adding their information to a larger bank of data, which can then be used for research studies. Each person’s sample is unique and helps ensure future treatments work for everyone.
What is a biological sample?
A biological sample is any human fluid or tissue that can be added to the biobank. Blood samples are used as these allow researchers to extract DNA, which is genetic information that is helpful in answering scientific questions, like what medicines may work best with which types of genetic makeups.
Can I change my mind?
Your participation is completely voluntary, and you may withdraw your consent any time. Any research data already obtained will remain part of the research that has been conducted. You can contact the Indiana Biobank via email at [email protected] or call 317.278.0880 with questions or to withdraw your consent. For questions about your rights as a research participant or to discuss problems, complaints, or concerns about the research study, contact the Indiana University Human Subjects Office at 800.696.2949.
Will my consent change my care or impact my insurance?
No. Your decision to provide, or to not provide, a biological sample does not affect your care or insurance in any way. If you say yes to the collection of an additional tube of blood, IU Health team members will collect this sample at your next blood draw or when it is most convenient for you. If you say no, it will not affect your relationship with your care team or the services you receive.
How will my privacy be protected?
Provena Consortium, powered by the Indiana Biobank, follows the same HIPAA rules as other U.S. healthcare organizations, including IU Health. Participants’ basic information is collected (name, address, email, etc.) and stored in a HIPAA-compliant database. At the time of consent, no personal health information is collected. Participants are assigned a study ID, and their biological sample and identifying information are stored based on this ID. No one other than specified study personnel has access to this information.
In addition, this information is protected through the National Institutes of Health’s Certificate of Confidentiality. This certificate protects against forced disclosure of personally identifiable information in any civil, criminal, administrative, legislative, or other proceeding, whether at the federal, state, or local level. This research also follows the Genetic Information Nondiscrimination Act (GINA), a federal law, which generally makes it illegal for health insurance companies, group health plans, and most employers to request the genetic information we get from this research and discriminate against you based on your genetic information. For more about GINA, visit: ghr.nlm.nih.gov/primer/testing/discrimination.
Will I receive information about this study?
Researchers may discover something based on your samples that could provide you with more information about yourself. For example, your genetic information may suggest you could be at a higher risk for a particular disease or condition. Participants in the Indiana Biobank may be contacted in the future to see if they would like to learn about this information. Participants who are contacted can tell us that they do not want this additional information. It is important to remember that the information we provide will not include medical diagnoses. If you have questions about this information, you should discuss it further with your medical provider. Furthermore, not all participants in the Indiana Biobank will receive additional information. If we do not contact you, it may be because: 1) Your sample has not been tested for certain information, 2) Your sample was tested but no relevant information was found, and/or 3) Your sample was tested, but researchers have decided to not return this type of information to participants.
