NCRI Registry Privacy Statement

Description
Time Involved
Risks & Benefits
Payments/Fees/Costs
Your Rights as a Participant

WHAT IS HIPAA?

HIPAA stands for the Health Insurance Portability and Accountability Act of 1996 and its regulations (the “Privacy Rule” and the “Security Rule”) protect the privacy of an individual’s health information and govern the way certain health care providers and benefits plans collect, maintain, use and disclose protected health information (“PHI”).

DESCRIPTION

You are invited to register in the NeuroCognitive Research Institute Research Registry. Our goals are to learn more about how to prevent and treat neurocognitive disease using case-control studies. This means we are looking to compare both patients with healthy individuals. Whether you have an illness or you are of good health, you can be included in our registry. By submitting your information via our online form, you are granting permission for us to add your information to our secure research database. If you are eligible for a study or studies, we will contact you to see if you are interested in participating. You may say “no” at any time to any study; receiving a phone call does not obligate you to anything. It also does not mean you are required to fill out any forms. Your information will only be shared with investigators within the NCRI. Only study personnel with HIPAA training are eligible to contact you.

 TIME INVOLVED

Filling out the NCRI registry form will take no more than 10 minutes.

RISKS & BENEFITS

There are no risks or benefits to filling out this form other than that you may be contacted to be in a research study. We cannot and do not guarantee or promise that you will receive any benefits worthwhile to you by being in our registry.

PAYMENTS/FEES/COSTS

There are no payments, fees or costs associated with filling out the NCRI registry form.

PARTICIPANT RIGHTS

If you have read this form and have decided to participate in ANY of our projects, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. This means you can change your mind. You also have the right to refuse to answer particular questions (this can be any question or questions). Your individual privacy will always be maintained in all published and written data resulting from the study. You will NEVER be personally linked with your data (called de-identifying). When we see your data, we will not know from whom it came. Your data will remain de-identified.

Authorization to Use Your Health Information for Research Purposes

Before you can proceed with providing us with information, it will be necessary for you to agree authorize using that information, some of which may be private health information (PHI). The information you provide cannot be used in any research study without your authorization. We do need to ask questions pertaining to some PHI (private health information) in order to interpret study results. Your information will only be used in accordance with your authorization, your informed consent for the study involved, and as required or allowed by law.

NCRI is committed to protecting your health information which is encrypted and stored in our secure research database for future use. You may be eligible for any of our studies now, or in the future, a member of the research team could contact you to see if you are interested in participating in one of our studies. At any time, you can request to have your information deleted and we will remove it entirely from our records.

The following parties are authorized to use and/or disclose your health information in connection with the NCRI research studies:

• The Protocol Director, Marcie Zinn, Ph.D.
• The Co-Protocol Director, Mark Zinn
• Other researchers who work with us in the future, who are fully trained in HIPAA procedures
• Research registry staff

Your authorization for the use and/or disclosure of your health information will expire on December 31, 2114. If you agree to participate in this research registry, please fill out our secure NCRI Registry Enrollment form.

CONTACT INFORMATION: If you have any questions, concerns or complaints about this research registry (study) you can always contact us.

Click here to complete the online form to be included in our enrollment registry database 

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