NCRI Registry Privacy Statement

Time Involved
Risks & Benefits
Your Rights as a Participant


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”).


You are invited to register in the NCRI Research Registry. The goal of the registry is to collect information from people who interested in participating our research projects. Our studies seek to compare patients with a diagnosed neurological condition to healthy individuals. Whether you have a neurological 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 online research database. If you are eligible for a study or studies, we will contact you for scheduling a brief phone screen based on certian inclusion/exclusion criteria. You may decide not to participate at any time and receiving a phone call does not obligate you to continue. The screening does not require you to fill out any forms. Your information is kept strictly confidential and only study personnel with HIPAA training are eligible to contact you.


Filling out the NCRI registry form will likely take you about 10 minutes.


The risks to completing the registry form are minimal. There are no direct benefits to being in the research registry. Your eventual participation will give us a better understanding of brain problems for people with neurological conditions, better prevention, and improved treatments. Overall findings will contribute to the body of knowledge and scientific information.


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


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 always 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:

• Principal Investigator, Mark Zinn, Ph.D.
• Other staff who are fully trained in HIPAA procedures

If you have any questions about the NCRI research registry, please contact us.