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Cleveland Clinic Healthy Brains Research Registry Information Sheet

The Cleveland Clinic Healthy Brains Registry is a research project.

This Research Registry will:

  1. Provide brain health information, tools and resources to help you reduce the risks for brain disease
  2. Build a community of people who are willing to participate in clinical research
  3. Advance knowledge and research on the brain health using information collected by the Registry

Participating in the registry provides access to an interactive platform and an online resource center through your computer, laptop, tablet, or smart phone. You will be able to:

  • Browse brain health information anonymously.
  • Receive current news, articles, tips and recommendations by providing your email.
  • Register for a free Brain Check-up by completing a series of online questionnaires regarding your age, gender, lifestyle, medical, and family history. You may also choose to complete optional memory and brain performance assessments.
  • Access clinical trials and current scientific news and updates on prevention, early detection and treatment of brain disease.

Signing up for this registry is completely voluntary. When you sign up, you will be asked to complete questionnaires which collect your demographic information, medical history and life style choices. A personalized Brain Health Index (BHI) will be generated based on your responses and a confidential report including the customized recommendation to maintain and improve brain health will be provided to you. You are also invited to complete an optional memory evaluation.

Signing up for this Registry will not enroll you in any other research studies. If you indicate an interest to participate in future clinical studies, information you provided can be used to find the specific studies suitable for you, and a separate consenting process when appropriate would occur.

Data from your registration (your demographic information, medical history and life style choices, and optional memory evaluation) will also be placed into the research registry to be used by Cleveland Clinic scientists and its partners/investigators to help advance research on brain health and to facilitate clinical trials/studies. Aggregate, de-identified data may be used and shared in social media, email updates and scientific presentations and publications in scientific journals.

A research registry is minimal risk research. There is a risk to the confidentiality of your data. The Cleveland Clinic respects your privacy and protects the confidentiality of your personal information. All data is collected, transmitted and maintained in a secure environment that is compliant with the US Health Insurance Portability and Accountability Act (HIPAA) and Cleveland Clinic Privacy Policy and Terms of Use.

If you choose not to participate in the Research Registry, you may still browse the website and access brain health information, wellness tips community resources, scientific news and updates.

Participating in the research Registry is completely voluntary. Your decision will not impact your current or future care at Cleveland Clinic. You may withdraw your participation from the research registry at any time without penalty by contacting healthybrains@ccf.org. Confirmation of removal will be provided via email.

For questions about the Cleveland Clinic Healthy Brains Research Registry please contact:

Email:healthybrains@ccf.org
Mail:HealthyBrains.org
888 West Bonneville Avenue
Las Vegas, Nevada 89106

For questions about your rights as a research participant, you can contact the Cleveland Clinic Institutional Review Board (IRB) at 1-800-223-2273 x 42924.

Indicate your decision to voluntarily participate in the Healthy Brains Research Registry by checking the appropriate box below.

A YES decision will link you to the Registry’s registration site and the questionnaires listed in this Information Sheet. A NO decision will allow you to browse the information on the Healthy Brains website. You will not receive the personalized Brain Health Index (BHI), and optional memory evaluation.