The Registry has two purposes. The first is to get the community involved in brain health research by connecting people with research opportunities across North Carolina. The second purpose is to share information to help people better understand brain health, learn about ways to keep their brains healthy, and find useful resources to assist people who are living with dementia and their caregivers.

The NC Registry for Brain Health is open to people all across the State of NC.

Alzheimer’s disease is a devastating disease and currently is the 6th leading cause of death in North Carolina. Finding cures for brain disorders like Alzheimer’s disease can only happen if we are all working together: the community, the patients, and the researchers.

Your participation in the Registry allows you to learn more about research studies. Whether or not you actually join any research studies, you will receive useful information about what is being learned about aging, Alzheimer’s disease, and other dementias as well as techniques and tips to keep your own brain healthy.

You will receive regular updates about the latest scientific news, tips you can use to keep your brain healthy, local events about caregiving and brain health, and who to contact if you need help with concerns about your memory or caregiving issues. If you choose, you may withdraw from the Registry at any time.

We hope you find the information we share about brain health interesting and helpful.  If you choose to participate in any studies we offer through the Registry, the benefits you receive will depend on the individual study. The study team will explain all potential benefits and harms when they talk with you about a study. Feel free to ask the study team about the benefits of participating in the study or any other question when you respond to the study alert before you decide whether to participate.

Your information is kept secure and is not shared. We will use your contact information to send you monthly e-mail newsletters that contain helpful information about brain health, upcoming events, and places to go for help. We will also share information with you about research studies that are enrolling in case you or someone you know would like to get involved.

Clinical research refers to studies done to better understand human health and disease and to develop better treatments or therapies.

Clinical research studies involve people, data, or samples of tissue.. They may help find treatments for diseases or explore ways to lower the risk of getting them. There are many types of clinical research studies. Some studies are observational which means scientists watch people’s behaviors or environments to better understand how diseases develop. Other studies are known as clinical trials, which test new medications, devices, or therapies. Some of these may involve blood samples or scans of the body. The NC Registry for Brain Health includes all of these types of studies.

Anyone age 18 or older may join the Registry. Each clinical research study has different eligibility requires, so not everyone in the Registry will quality for every study.

You may be eligible for a number of studies anywhere in North Carolina. You will receive emails when there are studies looking for someone like you. When a Registry study begins, the Registry team sends a message to those people who fit the criteria outlined by the study (e.g., people between the ages of 45 and 85 who live in a certain part of NC).  The researcher will not contact you directly. Instead, you will call or email the research study team if you are interested in being part of the study. You are never required to participate, and you can always ignore the alerts you receive.

Yes! In fact, many researchers studying brain health are looking for healthy study participants 18 years of age and older. By studying both younger and older people, researchers seek to better understand the earliest signs of disease before symptoms appear and develop ways to prevent these diseases.

This will vary by study. Some research takes place on site at the participating institutions: Duke University, East Carolina University, North Carolina A&T State University, The University of North Carolina at Chapel Hill, and Wake Forest School of Medicine. Many of the research studies are also exploring the possibility of offering “remote participation,” such as doing parts of the study online or having the research team come to the participant’s home.

Time commitment varies with each study. Each study team will discuss with you the time needed for that study so that you can decide whether to get involved in their study or not.

Responding to a call for participants lets a researcher know you’re interested in a study, but does not always mean that you will be selected. Study teams look at many factors before they enroll a participant, including how many participants are needed. Don’t be discouraged if you are told you’ve not been selected for a given study. You may be selected in the future for another study.

Before you enroll in any study, you will be given details of the study including any risks and benefits during an informed consent process. All participants in research have the right to withdraw at any time.

There is no cost to participate.

This varies by the research study. Compensation is available for some studies. Travel and transportation may be reimbursed for participants in some studies.

While some studies may involve medical treatments, this should never replace regular medical care.  Before participating in a study that involves medical treatment, you should first discuss the study with your physician.