Frequently Asked Questions about GeneMatch | Alzheimer's Prevention Registry

You are here

Frequently Asked Questions about GeneMatch

1. ​What is the GeneMatch Program?

GeneMatch is a program of the Alzheimer’s Prevention Registry led by Banner Alzheimer’s Institute to identify people interested in being matched to Alzheimer’s prevention studies based in part on their genetic information.

2. What is the purpose of GeneMatch?

Approximately 80% of research studies do not complete enrollment on time because they cannot recruit enough eligible volunteers. GeneMatch was established to recruit participants for Alzheimer's prevention studies, using genetic testing (through free cheek swab kits) to match volunteers with research opportunities. It is our hope the GeneMatch program will advance Alzheimer’s research by helping scientists find enough eligible participants to launch new studies.

3. What genetic information is GeneMatch collecting?

GeneMatch only collects information about which form of a gene (known as the APOE gene) you have. We do not store your DNA for future testing.

4. Who is eligible to join?

To participate in GeneMatch, you must be between 55 and 75 years old, live in the United States, and not have a diagnosis of cognitive impairment, such as mild cognitive impairment (MCI), Alzheimer’s disease, or dementia.

5. What types of medical conditions would disqualify me from participating in GeneMatch?

The only exclusionary medical condition is a diagnosis of a cognitive impairment, such as mild cognitive impairment (MCI), Alzheimer’s disease, or dementia.

6. What if I’m already participating in another study?

GeneMatch does not exclude people who are enrolled in another study. However, if you are matched with a study opportunity through GeneMatch, it is important that you discuss the nature of that research study with study doctors.

7. How long will GeneMatch be recruiting participants?

We anticipate that this program will be enrolling participants over the next several years, so please do not worry if you are not eligible to join right away.

8. Will I be able to learn my genetic results through GeneMatch?

No. The genetic testing for GeneMatch is obtained only for research purposes. GeneMatch uses the test results to match you to Alzheimer’s studies. If you are matched with a study opportunity, you will be contacted by GeneMatch to find out if you are interested in taking part in that study. These study opportunities may (or may not) offer you an opportunity to learn your APOE results as part of your participation in that particular study.

9. Why does GeneMatch not disclose genetic information?

Disclosure of genetic information is the practice of medicine and requires specific guidelines to be followed, including working with a genetic counselor or other licensed healthcare professional (regulations vary from state to state). It is important to note that the APOE genetic test has not be established as a diagnostic tool to predict the future development of Alzheimer’s disease. GeneMatch is a research program approved by the Institutional Review Board to match people to studies based in part on their APOE results; we are prohibited from disclosing the genetic test results since they were collected for research purposes only.

10. How can I learn my APOE results outside of GeneMatch?

At this time, it is not recommended to learn your APOE genetic test results as part of your routine medical care. For more information, see this recommendation from the American College of Medical Genetics and Genomics. If you are still considering to pursue APOE genetic testing we encourage you to speak with a genetic counselor, based on the recommendations from the American College of Medical Genetics and the National Society of Genetic Counselors.

11. I already know my APOE genetic results. Can I still participate in GeneMatch?

Yes, you can still participate in GeneMatch. GeneMatch will still require you to submit a cheek swab to the lab for verification purposes. GeneMatch will use the results to help match you to Alzheimer’s prevention studies.

12. What are the benefits of GeneMatch?

There is no direct benefit to you for joining and you will not receive any healthcare services. We hope the knowledge gained will be beneficial to society in improving our understanding of database registries, their role in research studies and clinical trials, and their ability to help accelerate enrollment into Alzheimer’s studies.

13. Do I have to participate in the studies I am matched to?

The choice to participate in any research study that you are referred to is always yours. This is an entirely voluntary process and we appreciate any time you give. As well, GeneMatch will not share any information with any study until you have agreed to participate.

14. What if I do not want to be matched to a drug trials?

If you are matched with a study opportunity, you will be contacted by GeneMatch to see if you would be interested in taking part in that study. These study opportunities may (or may not) include drug trials. The choice is always yours on whether or not you would want to participate in that specific study opportunity.

15. If I am matched to a study, does it mean I have a higher risk of developing Alzheimer’s disease?

No. If you are matched to a study it does not mean you have a higher risk of developing Alzheimer’s disease. Each study has its own recruitment criteria which will be clearly explained to you when you receive a study invitation.

16. How long will I be in the GeneMatch program?

Your genetic test results will be stored in the GeneMatch database for as long as the program is active. If you wish to remove your contact information from our database, please contact us at GeneMatch@endalznow.org

17. Does GeneMatch share my information with researchers?

Research programs are under strict confidentiality guidelines; we are not allowed to share your information without your consent. Although GeneMatch may invite you to a study, GeneMatch will not share your contact information with that enrolling study until you give us permission to do so. This way you can ask your specific questions to the particular study for which you are invited and decide if it is a good fit for you.

18. How is my confidentiality maintained?

Because GeneMatch is a research program, we are overseen by an Institutional Review Board ethics committee and, because our Institute is part of a health care organization, we are also governed by HIPAA.

GeneMatch is managed by Banner Health. Banner Health complies with all local, state, and federal laws when it comes to patient privacy. To learn more, see Banner’s policies to protect individual patient health information, including Banner’s Notice of Privacy Practices (HIPAA).

DNA samples will be destroyed by the lab following APOE testing and entry of the results into the secure, HIPAA compliant database. Genetic test information will be kept in a database that is separate from your contact and demographic information.

In addition, the study staff has obtained a Certificate of Confidentiality from the National Institutes of Health. The researchers can use this Certificate to legally refuse to disclose information that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings, for example, if there is a court subpoena.

19. Are there any costs associated with participating in GeneMatch?

No, there is no cost associated with participating in GeneMatch.

20. Will I be paid for my participation in GeneMatch?

The GeneMatch program itself does not provide compensation. If you are matched with a study opportunity, you will be contacted by GeneMatch to see if you would be interested in taking part in that study. The study opportunity may (or may not) offer compensation as part of your participation in that particular study.

21. How is GeneMatch funded?

GeneMatch is led by Banner Alzheimer’s Institute, a not-for-profit organization. GeneMatch is funded by a grant from the National Institute on Aging, the Alzheimer’s Association, and other philanthropic organizations.

22. Who can I contact if I have questions about GeneMatch or a study I am matched to by GeneMatch?

You may contact GeneMatch by emailing GeneMatch@endalznow.org or by calling 1-888-STOP-ALZ (1-888-786-7259). 

 

Spread the Word

Ask your family and friends to join you in preventing Alzheimer's disease.