Introduction

Alzheimer’s disease remains one of the most pressing public health challenges in the United States, with growing emphasis on early detection, prevention, and equitable access to research participation. As advances in genetics, biomarkers, and precision medicine continue to reshape the field, the importance of community engagement and inclusive research has become increasingly clear. The NC Registry for Brain Health was developed to bridge the gap between scientific discovery and public participation by connecting individuals across the state to brain health resources, educational opportunities, and clinical research.
In this interview, Kathleen Welsh-Bohmer, PhD, Professor of Psychiatry and Neurology at Duke University and co-leader of the Registry, discusses her decades-long work in Alzheimer’s research, the origins and mission of the Registry, and the role of community partnership in advancing dementia prevention and brain health across North Carolina.

Dr. Welsh-Bohmer is also the co-director of the Outreach and Recruitment Corps for the Duke UNC Alzheimer’s Disease Research Center, the director of the Alzheimer’s Disease Therapeutic Area at the Duke Clinical Research Institute, and a faculty member at the Duke Institute for Brain Sciences.

This is a written, condensed version of an oral interview and has been edited for length, clarity, and style. To listen to the full version of this interview, click here.

Roshni Arun: Can you tell us about your background in clinical research and studying aging, memory disorders, and pre-clinical and early-stage Alzheimer’s disease?

Dr. Kathleen Welsh-Bohmer: I’m a clinical neuropsychologist by training. I’ve trained in psychology with a specialization in what can go wrong with the nervous system to create problems in thinking, memory, and function. I’ve been on the faculty at Duke since the late 1980s, working with a broad team of clinicians and scientists to understand the biology of Alzheimer’s disease and to develop treatments and prevention strategies.

My early work began with Dr. Allen Roses, a neurologist who was at Duke and focused on the genetics of Alzheimer’s disease. Back in the 1980s, that was a pretty revolutionary idea. There was very little evidence that genes were playing any major role in the disease, but that’s all changed now. By studying families living in North Carolina for whom Alzheimer’s disease appeared to be affecting many generations, we were able to identify a gene called apolipoprotein E, or ApoE for short. We now recognize it as a major gene contributing to the risk of developing Alzheimer’s disease.

This discovery gave us a strategy for being able to study people who might be at immediate risk of clinical disease and then develop ways to diagnose it earlier. We could look for people who had the gene that was increasing the risk of disease to explore better tests for detecting Alzheimer’s disease early, with a goal of eventually developing effective therapeutics. Finding a risk gene changed the field of Alzheimer’s disease research entirely and allowed clinically researchers a way to study what we call “preclinical disease,” before the symptoms even begin to express. These really exciting times date all the way back to the 1980s but have taken us to where we are today, where we now have a couple of disease-modifying treatments for Alzheimer’s disease.

Roshni Arun: Can you tell us about how the NC Registry for Brain Health began? As a co-leader of the Registry, what inspired you to become involved with this particular initiative?

Dr. Kathleen Welsh-Bohmer: It was a journey to get to where we are today. The NC Registry for Brain Health, or the “Registry” for short, grew out of an interest that our research would include the populations who are at the highest risk of developing Alzheimer’s disease and that the results of our work would generalize to the communities we serve here in North Carolina. That means diverse communities, including men, women, rural and urban communities, and all ethnicities.

In 2009, we were preparing to do a large primary prevention trial of Alzheimer’s disease. With the launch on the near horizon, we knew we had a challenge. Where exactly do we go to find participants? If this were an Alzheimer’s disease trial in symptomatic patients, we could recruit from our memory clinics. In a prevention trial, where we are delaying or averting the symptoms altogether, where do we turn? Where is there a clinic with healthy people who don’t have symptoms of a disease who want to get involved in the study? There really was no feasible clinic for that.

To solve this problem, we decided we needed to reach out to the community, to the people who are healthy, not having symptoms, and ask them to partner with us in our research. That became the genesis of what we called, at that time, the Alzheimer’s Disease Prevention Registry (ADPR) at Duke. Our goal was to ask the local community to help us with our research by signing up for the ADPR and getting involved in Alzheimer’s prevention studies—including perhaps this big clinical prevention trial that was getting ready to launch—but also all sorts of other studies that were designed towards trying to delay the symptoms of Alzheimer’s disease.

As we designed the ADPR, top-of-mind was making sure that we included and involved broad and diverse communities, not just those groups that are most convenient to study. We wanted to get our message out to the whole local community, with all of its medical and sociocultural diversity. At that time, about 37% of our local population in Durham identified as African American, but in our studies, less than 10% of the participants identified as either African American or Black, which was concerning if we’re trying to represent our community.

This concern was further underscored by emerging data at that time, suggesting that African Americans have about a two-fold higher risk of developing Alzheimer’s and related dementias, a finding later confirmed in other population-based studies. The disproportionate risk of Alzheimer’s disease in African Americans made us realize that we would be missing a key group in Alzheimer’s prevention studies if we did not do a better job of including African Americans and other communities at risk of disease.

We had to come up with a strategy that was going to allow us to get into the community and get people involved, particularly people who have been historically reluctant to get involved in research studies. As we built this new Alzheimer’s Disease Prevention Registry, we partnered with the African American Community Outreach Program, which was at Duke and headed by Reverend Henry Edmonds. Through his collaboration and his network of faith-based organizations and communities, we were able to successfully put together what I call a research-ready group of people. These are people who said, “Yeah, I’m interested in potentially getting involved in research. Put me on your contact list of people and we’ll partner with you and with your research studies.” Within three years of working with the community to build the Alzheimer’s Disease Prevention Registry at Duke, we had over 3900 members, of whom 38% identified as African American. This early work with the ADPR that I’ve just described demonstrated that it was feasible to build a population-focused resource for research and laid the groundwork for the later NC Registry for Brain Health.

The early work of 2009 demonstrated that the community and populations of color do indeed want to get involved and informed about brain health research. These communities tell us that they simply need to be asked to get involved, and they need to know what opportunities exist. Fast forward to 2015, Dr. Goldie Byrd (who was then at North Carolina Agricultural & Technical State University [NC A&T]), the North Carolina Institute of Medicine, and AARP North Carolina were pulling together a task force to help develop the state plan for North Carolina, required of all states in the United States by the National Alzheimer’s Project Act (NAPA). I was invited to be a part of the task force to advise from the perspectives of clinical care and clinical research.

Among our suggestions, we recommended that it would be important to have a coordinated research effort in the state that would facilitate the public’s research involvement. Using the ADPR as a model, we suggested that this approach of community involvement could be expanded statewide. Instead of it being local to Duke and to Durham, we could develop a similar registry that would allow people from across the state to hear about research and get involved if this is something they were interested in doing. The goal would be to increase public awareness of dementia and improve accessibility to brain health research across the state. That was how the NC Registry for Brain Health was born and why we’re so passionate about it. It’s a resource that provides well-vetted updates on ways to advance brain health, as well as information about events and research studies going on here in North Carolina that are focused on Alzheimer’s disease and dementia prevention.

Roshni Arun: In addressing more of the foundational aspects of the program, what are the Registry’s goals when it comes to improving brain health across North Carolina? How does the registry differ from other brain health or dementia initiatives nationally or statewide?

Dr. Kathleen Welsh-Bohmer: The fundamental goal of the Registry is to accelerate brain health research in North Carolina by connecting people across the state, especially those underrepresented in research, with opportunities to participate in studies. In doing so, we also support Alzheimer’s disease researchers by facilitating recruitment for studies aimed at understanding dementia and improving its diagnosis, management, and prevention, helping ensure North Carolina remains at the forefront of brain health research.

Another key role of the Registry is to empower personal action by sharing trusted, up-to-date information about Alzheimer’s disease and brain health. By translating research advances for the public, we help people take charge of their brain health and adopt strategies that may delay or prevent cognitive decline, while also ensuring that research moves forward in an inclusive way.

We differ from other brain health registries in that the NC Registry for Brain Health is focused entirely on North Carolina. We support brain health research at universities across the state—at Wake Forest University, Duke University, the University of North Carolina at Chapel Hill, East Carolina University, and North Carolina A&T State University, as well as others; we want to make sure that the information learned is shared back with communities so people can use it to improve their own brain health.

Importantly, the NC Registry for Brain Health is a free resource for all North Carolinians. Members of the Registry receive regular updates on brain health research, events, and resources through monthly e-blasts and quarterly newsletters, as well as notifications about enrolling research studies and opportunities to participate. It is a low-touch way to share valuable information about brain health and encourage public engagement in brain health research.

Roshni Arun: So, the Registry is not just for enrolling participants in studies; it also focuses on educating people, providing resources, and making research accessible to underrepresented communities in North Carolina as well—these are incredible feats. I also really appreciate how you emphasized personal choice and a low-pressure environment, which could encourage broader participation.

On top of just disseminating knowledge, we were curious to know more about the NC Registry for Brain Health’s focus on engaging people with clinical research opportunities. What kinds of opportunities does the Registry create for both Registry members and researchers in North Carolina?

Dr. Kathleen Welsh-Bohmer: A big part of what we do is exactly what you pointed out. We share information about research studies and allow individuals to decide whether participation is right for them. Members include people without memory problems who are concerned about developing a dementing disorder, individuals with memory difficulties, and caregivers. While their circumstances differ, they share an interest in research and are often open to participation when studies align with their needs or could benefit those they care for.

As for your question as to what types of studies we offer, our study portfolio is broad and focused on brain health and prevention. We support studies aimed at improving memory in people with cognitive concerns, caregiver-focused studies, and lifestyle interventions. Currently, the Registry supports about a dozen actively enrolling studies, including one exploring dance and music for individuals with memory problems. We also support prevention-focused studies, including one examining the effects of a ketogenic diet on brain health. Other studies aim to improve early diagnosis, including work on new, noninvasive biomarkers and retinal imaging to detect early biological changes through the eye. We share these opportunities with our members so they can decide whether to participate. In addition, beyond the studies we offer, members also receive a monthly e-blast highlighting the latest brain health research from around the world, along with local news and available resources.

For researchers, the Registry provides a direct way to connect with people who are interested in participating in research, which is often one of the biggest barriers to study success. Through the Registry, researchers can quickly reach potential participants and gain visibility through our member communications, website listings, and monthly e-blasts. Members may further share this information within their own networks, helping broaden awareness of research happening across North Carolina. This creates a mutually beneficial relationship for both participants and researchers.

Roshni Arun: Absolutely. I think this is such an amazing resource for individuals, both for researchers and the general public. Having a dedicated platform for brain health is super encouraging for those who may not be as familiar with using clinical research databases like PubMed or ClinicalTrials.gov. Can you tell us about a specific example of how participation in the Registry contributed to advancing dementia or Alzheimer’s research in North Carolina?

Dr. Kathleen Welsh-Bohmer: We’ve supported over 30 studies at this point, and in 2026, we have about 16,000 people who are in the Registry. About 45% of these individuals identify as coming from a racial group other than White. We have a very ethnically and culturally diverse group of people who are interested in getting involved in research. We’ve contributed to science by providing a much more representative group of people who are getting involved in research.

A study that comes to the top of my mind, which has benefitted from the Registry, includes the “Memory & Aging Study,” a longitudinal cohort study of the Duke/UNC Alzheimer’s Disease Research Center (ADRC). This study intends to enroll and follow over 350 adults who are 55 years of age or older and at risk of Alzheimer’s disease by virtue of having a risky ApoE genotype or a family history of Alzheimer’s disease. These individuals undergo a very complete memory evaluation with the latest imaging and fluid biomarker studies to examine the changes in biological profiles in advance of any disease symptoms.

The Memory & Aging Study is fundamental to the science of the ADRC program, and the Registry has provided important requirement support. Nearly 2000 invitations to participate have been sent to the Registry members who appear to meet some of the basic qualifications of the study. From these invitations, 298 people have expressed interest in helping, and 116 people have enrolled in the study to date; another 25 people are in the queue to participate. Over the last three years, the Registry has been able to fill nearly one third of the participation slots that the ADRC study requires to provide meaningful results. As a single recruitment source, the number of people available to be contacted and then successfully enrolled in the research study is remarkable. Importantly, these participants come from all different sectors of our community, reflecting the local population we serve and the groups at highest risk of developing Alzheimer’s disease.

To this latter point, I must underscore that the future of Alzheimer’s disease treatment is focused on precision health: delivering the right therapy at the right time, whether before symptoms begin, during symptomatic stages, or at the later stages of disease as behavioral changes emerge. Achieving this requires research participation from people of all backgrounds and at all stages of disease. Since its launch in 2019, one of the Registry’s greatest contributions has been helping researchers better reflect the real world in their studies.

Equally important, the Registry has increased research literacy in the community. While interest in research grew during COVID, fears and misconceptions persisted. The Registry has played a key role in community education, explaining what research is, showcasing different types of studies, and dispelling myths, so that people who want to participate can do so with understanding and confidence. We’ve advanced this work through extensive outreach, including a webinar series with the Alzheimer’s Association and the Wake County Public Libraries. These sessions cover the basics of research and the protections in place to keep participants safe, helping the community better understand what research involves. The Registry has seen real success, not only in scientific contributions, but also in educating the public and dispelling common myths about research.

Roshni Arun: It seems like the Registry is a very crucial connector in the research world. Often, the challenge with clinical studies or research studies is that there’s a gap between the science and the way it’s communicated. It’s exciting to see that the Registry is working to bridge this gap. In a similar vein, one of the most important contributors to success in scientific research is collaboration. What strategies have been most effective in connecting diverse communities with research opportunities across the state?

Dr. Kathleen Welsh-Bohmer: We focus on candid communication. While we have broad outreach through our website and social media, our most effective approach, especially with diverse communities, is direct, in-person engagement. By meeting people where they live through community events such as health fairs, festivals, and sporting events, we start conversations about research, introduce ongoing studies, and invite people to participate through the Registry. Simple, infographic-style flyers reinforce this outreach and help spread the word beyond events. Commonly, we hear from people that they joined the Registry after attending one of our community events, or they heard about us after a friend or family member passed one of our flyers along to them.

Other strategies that extend our reach across the State are our educational series, including the webinar events I mentioned earlier, done with the Alzheimer’s Association and Wake County Public Libraries, as well as in-person “Caregiver Colleges” done through Wake Forest University and North Carolina A&T. The library webinar series is conducted in the evenings so that people can attend while they’re at home. However, because the webinar is recorded, people who missed the live discussion can always go back to the resource library to view the event and learn more. The caregiver-focused events introduce numerous families across North Carolina to research while providing them with access to support services that caregivers really want and need. Together, these virtual and hands-on events connect communities across North Carolina to research, education, and practical support. They also exemplify our fundamental communication approach, which is to listen to communities and respond to their needs while building awareness of research and brain health.

Roshni Arun: We are also interested to learn about how representation is encouraged within the brain health network. How does the NC Registry for Brain Health work to ensure that people from underrepresented backgrounds feel included and empowered to participate in brain health research?

Dr. Kathleen Welsh-Bohmer: As we launched the Registry, we were sensitive to how we reach out to underrepresented communities from the very beginning. We knew that people are curious about research, but this interest is balanced by a level of caution when it comes to getting personally involved. There’s a long history of research abuses that have occurred within minority communities, groups that are now underrepresented in brain health research and clinical trials. The Tuskegee Study of Untreated Syphilis done on Black men from 1932 to 1976 is the most egregious example of past unethical research practices. There are now safeguards and federal laws in place to protect participants in studies and to prevent research abuses from occurring again. This includes mandatory requirements for all investigators and their staff who are conducting human subject research to know and adhere to the protections around participant privacy, respect, and transparency regarding research goals, approaches, results, and the ability for all participants to withdraw at any time, no questions asked and no consequences. Additionally, there are requirements for review and regulatory oversight of all studies by local Institutional Review Boards (IRBs). Noncompliance can result in monetary and civil penalties to investigators and to their institutions.

Despite these safeguards, the Tuskegee Study continues to cast a long shadow over research today and contributes to the natural reluctance of minority communities to get involved in studies. To address this reluctance and to develop trustworthiness of our NC Registry for Brain Health in the community, we have been fortunate to have the leadership of our co-director, Dr. Goldie Byrd. Her work underscores the importance of authenticity, transparency, and accountability in research. Our approach with the Registry rests on our faculty and our coordinators being present within the community and partnering with trusted community leaders so that there can be candid discussions about research, which addresses concerns in a protected way. This allows people to get information from credible sources and from voices who are accountable to the community.

Importantly, joining the Registry does not automatically enroll people into any particular research study. Rather, the Registry is an information resource that keeps people aware of the latest news in brain health research and study enrollment opportunities. With this information, members can decide for themselves, at their own pace, whether to get involved in research and which studies they find most appealing.

At the Registry, we pay attention to the member experience, and we listen to what is important to them when it comes to brain health and brain health research. We are constantly evolving based on what we hear: what studies participants have liked, what studies get the most activity, and how the content we provide in our communications can better address community needs around brain health. In the “Ask the Expert Column” of our newsletter and at our community events, we will get great questions about actionable approaches that people can take to improve brain health. We make sure that these topics are covered with evidence-based strategies in the materials that we provide.

Roshni Arun: I think that’s such a great approach. Especially in conversations surrounding representation and general support, sometimes hearing the raw stories and narratives of individuals in these communities speaks to a lot more than just statistics or numbers. What are some of the barriers that you have noticed through your work when it comes to people participating in clinical trials, caregiving, or even receiving care?

Dr. Kathleen Welsh-Bohmer: You would think that the biggest barriers to getting into clinical trials and other studies would be the challenges we have been discussing—reluctance—but actually, the biggest barrier to studies is often the restrictiveness of their inclusion and exclusion criteria. These criteria are in place to ensure optimal scientific rigor and to ensure patient safety by avoiding medical complications. However, a downside of these restrictions is that they may disqualify many interested people.

To address these barriers, investigators are reexamining study criteria to improve accessibility without sacrificing safety or rigor. In Alzheimer’s trials, requirements such as having a caregiver attend all visits, traveling to distant sites, and scheduling visits during business hours can exclude working individuals and those without available support partners. The field, including the Registry, is actively working to reduce these barriers. Advances in digital technology and telemedicine have enabled more inclusive approaches, including fully remote studies, some of which are now offered in our Registry.

Roshni Arun: On the topic of collaborations, what partnerships have been the most meaningful or impactful, and how has the NC Registry for Brain Health impacted recruitment for dementia research in particular?

Dr. Kathleen Welsh-Bohmer: I have described how we have enabled studies, like the Alzheimer’s Disease Research Center (ADRC) Memory and Aging Study. Our most impactful collaborations have emerged through the five academic center collaborative partners. At Wake Forest University, co-director Dr. Goldie Byrd brought deep community connections from her leadership at the Maya Angelou Center for Health Equity, enabling meaningful engagement with African American, Latino, and Native American communities around the importance of participating in health research. North Carolina A&T, led by Dr. Ashley Sanderlin through the Center for Outreach in Alzheimer’s, Aging and Community Health (COAACH) program, has strengthened our local outreach via trusted community, health education, and caregiver programs. At East Carolina University, Dr. Russ Price’s team has expanded our reach through health education and partnerships with AHEC, increasing awareness of the Registry among rural health professionals who support patient referrals. The UNC-Chapel Hill site, led by Dr. Gaurav Dave, contributes expertise in community health and data science, including the Abacus Evaluation program, which supports continuous improvement of our efforts. Duke brings long-standing expertise in epidemiology, registries, and health communication through the coordinating center led by Dr. Brenda Plassman and Dr. Marianne Chanti-Ketterl, along with our partnership with the Duke Clinical Research Institute. Together, these five sites have enabled statewide coverage and substantially improved recruitment far beyond what any single site could achieve alone.

Roshni Arun: It’s great to see that there’s such a diversity in the institutions and the disciplines represented in the collaborations across the state. From more of an educational standpoint, what do you think are some simple steps people can take today to support brain health across North Carolina and to engage in their own brain health?

Dr. Kathleen Welsh-Bohmer: I love talking about this. There are probably three key areas that people can tackle right away, and they’re very well supported by a strong body of research literature as being effective. First and foremost, a key way to improve brain health is just getting physically active. Time and time again, research studies are underscoring that physical activity is important for brain health. This can be anything from walking, swimming, tai chi, yoga; anything that gets the heart pumping is important. We’re seeing that by improving cardiovascular health, we’re also improving brain health. Physical exercise can also build strength and prevent or reduce the possibility of falls, which, of course, affect brain health.

One simple way to be more active is to stand up if you can; getting vertical throughout the day can improve health. The American Heart Association recommends at least 150 minutes (about 2.5 hours) of moderate physical activity per week for heart and brain health, such as walking. That works out to be about 30 minutes a day, five days a week.

The second important step to good brain health is paying attention to what we eat. A balanced diet with plenty of fruits and vegetables, beans, whole grains, lean proteins, and healthy fats can reduce inflammation and stress that affect both heart and brain health. Omega-3s, like those found in fish, are especially helpful. You often hear about the Mediterranean or MIND diets for brain health, but the core idea is simple: focus on whole, healthy foods—especially fruits and vegetables.

Small steps people can take include cutting back on sugar and salt and limiting processed foods. A good rule of thumb is to shop the perimeter of the grocery store, where you’ll find produce, meat and seafood, dairy or alternatives, eggs, whole grains, and some frozen staples. These whole foods are the best choices for supporting overall brain and heart health.

Finally, it’s important to use our brains. Challenging ourselves by learning new things, thinking, and staying engaged helps keep the brain healthy. Educational programs and social activities are especially helpful. Being around other people naturally exercises the brain as we listen, respond, remember names, and stay aware of our surroundings. All of this supports healthy aging and better brain health.

Brain games can be fun and help with learning, but on their own they probably don’t make a big difference. If that’s all someone can do, they’re still worth trying. But engaging with other people through social activities is one of the most powerful ways to challenge the brain. So, the three big takeaways are staying active, eating well, and keeping your brain engaged, especially by staying connected to other people.

Roshni Arun: You bring up some really good points about the approach that individuals should take to care for their brain. It really is a holistic approach that encompasses all facets of their environment in addition to components like diet. Some of these other aspects, like community, language comprehension, or social interaction, aren’t widely known to be preventative measures one can take for brain health. It’s great that the Registry is making this information more accessible. How does the Registry shift the conversation from treatment to preventative care?

Dr. Kathleen Welsh-Bohmer: Shifting the focus from treatment to prevention is actually pretty straightforward. People are very curious about Alzheimer’s and eager to know whether there’s a cure, what treatments exist, and what trials are underway. That interest usually comes from a very personal experience with the disease—a family member or friend who has suffered from the disease. Others are familiar with it from what they’ve seen in their community or what they’ve heard in the media. Almost everyone has encountered dementia in some way. That said, people don’t want to wait until they need treatment. They want to know that options may be there someday, but they also want to take control now and reduce their risk while they are still healthy. That’s why we talk so much about prevention in the Registry. It’s something everyone can engage in, because even with health challenges, there are simple steps we can all take to support our own brain health.

When we’re out in the community, or on our website, we often talk about the seven pillars of brain health. I’ve mentioned exercise, healthy eating, and keeping the brain engaged. The other pillars include managing stress, getting good sleep, and staying on top of health conditions with regular checkups. I include research participation as the final seventh pillar. Getting involved in research allows us a more active voice in steering our health future. Taken together, these seven pillars allow us to take control of our health at whatever level feels right. Early detection and staying current with our medical care allow for problems to be caught earlier, when they are often easier to treat. Approaching brain health around these seven pillars allows people to take action now to lower their risk of developing dementia, even as treatments continue to develop.

Roshni Arun: Especially now with chronic diseases like brain-related diseases, cancer, age-related diseases, I think we’re seeing how important taking proactive action is in terms of general health sustainability. Creating a strategy with the seven pillars of health really helps outline what is necessary and what efforts a general community can make to preserve their health or ensure their health long-term. Our next question for you: what misconceptions about brain health or dementia do you hope to get rid of through your outreach?

Dr. Kathleen Welsh-Bohmer: One of the biggest misconceptions we’re trying to address is what people think about when they hear the word “research.” Many assume research automatically means drug trials or experimental treatments. Even in brain health, people often think they’ll be asked to test an experimental medication. In reality, much of the most important research over the past several years has focused on prevention and on developing better tools to detect and track disease.

A great example of prevention research is the U.S. POINTER study, led out of Wake Forest University; they reported their results last July. This large national study tested whether lifestyle changes, specifically healthy diet, exercise, cognitive engagement, and managing medical conditions, can improve cognitive outcomes. Participants were followed for two years; some received intensive health coaching, while others received the same information but had to self-motivate. Both groups improved cognitively, with the greatest gains in those who had coaching. This study was a clinical trial and provided strong evidence that everyday lifestyle changes can make a real difference, without testing a drug.

Similar lifestyle prevention studies are supported through the Registry, as well as research studies evaluating blood-based Alzheimer’s biomarkers and digital tools, such as wearables and smartphone apps that track brain health, sleep, stress, and cognitive change over time. These approaches could give clinicians an easier way to reliably monitor patients and the progress they are making in their brain health. The key message I hope this underscores is that today’s brain health research is not just about drugs. It includes prevention studies, observational research, and non-drug interventions. The portfolio of studies available and open to the community is far broader than traditional clinical trials.

Roshni Arun: A lot of the topics that you brought up come back to the idea of precision medicine. One of the biggest bottlenecks in precision care is that the therapeutics or medical treatment developed aren’t based on representative data. It’s great to see that there’s such an evident push for more comprehensive research and data on different populations for biomarker identification and therapeutic development. Looking ahead, what are your future goals for the Registry, and what new initiatives, outreach efforts, or research directions are you most excited about?

Dr. Kathleen Welsh-Bohmer: A major focus of the Registry work is making research accessible to everyone, which is essential for precision health. We want our studies to reflect people from all walks of life and all communities. Right now, research participation tends to skew toward women and White populations, with men, people of color, and rural communities underrepresented. Through the Registry, we’re prioritizing outreach to rural areas, engaging more men, and broadening participation among communities of color. Over the next year, we’re taking what I call a “go big” approach: a statewide public awareness campaign using digital strategies to expand our reach. At the same time, we’re increasing awareness among researchers so they fully understand what the Registry offers and can connect people to exciting new research opportunities while strengthening recruitment. We’re also planning community-based focus groups to better understand what people want and need, and to use that feedback to improve our work and sharpen our message statewide. I’m really excited about what this “go big” effort will bring in the year ahead.

Roshni Arun: In your work as an educator and as a clinical researcher, what is your hope for the next generation of researchers, and what is needed to make trials more efficient and inclusive?

Dr. Kathleen Welsh-Bohmer: Part of my hope, both for the next generation of researchers and for clinical trials, is that we use technology thoughtfully to make research more streamlined, accessible, and appealing to as many people as possible. But my biggest hope, as an educator and clinical researcher, is to build a strong next generation of clinician-scientists who truly reflect our communities. I don’t want students, whether in high school or college, to feel discouraged about entering the field.

The United States has long been a global leader in scientific innovation. Sustaining that leadership requires a steady pipeline of talented, passionate people with new ideas. Recent funding cuts and fewer opportunities can be discouraging, especially for early-career investigators, but I would urge people not to lose heart. There are many opportunities across our partner institutions to stay engaged in science, including summer programs for high school, college, and medical students. At Duke alone, programs span the DCRI (the Duke Clinical Research Institute)—our engineering and brain sciences programs. Similar opportunities exist at the other universities involved in the NC Registry for Brain Health. This is an exciting time to be involved in brain science. There’s real momentum and still so much to learn. I strongly encourage the next generation to consider this field.

Roshni Arun: I think that in addition to the representation on the clinical-trial side, we really need a diversity of perspectives from scientists who are developing the science for treatments and developing the science for diagnostics and preventative care. Coming from an undergraduate student’s perspective as well, I think you’re absolutely right—encouraging and fostering a love for science starts young. Throughout middle school, throughout high school, and throughout undergrad. It’s great that there’s such a push for this and that the Registry supports this message as well. One of our last questions for you: how can individuals or health care professionals get involved or support the mission?

Dr. Kathleen Welsh-Bohmer: I am so glad you asked that question. The answer is an easy one. People can join the NC Registry for Brain Health at ncbrainhealth.org. We welcome questions and suggestions. People can email us to ask questions about brain health, research opportunities, ways to partner, and the resources available to help families on their journey. We’re always happy to respond to these inquiries, let folks know where we’ll be next, or direct them to helpful resources across the state. Visit the website to learn more and to get involved.

Roshni Arun: It’s really clear that the Registry is not only advancing scientific research, but also empowering communities across North Carolina with the knowledge, the resources, and opportunities to participate in conversations, from fostering inclusion and representation in research to also being very proactive about brain health strategies. I think the work that you and your collaborators are doing really demonstrates how science and public engagement go hand in hand. We really look forward to seeing how the Registry continues to grow, inspire future researchers, and make a tangible impact on brain health statewide. Thank you so much.

Dr. Kathleen Welsh-Bohmer: Thank you. It’s really been great, and I really enjoyed the opportunity to talk about what we’re doing at the NC Registry for Brain Health.


Acknowledgments

The interviewee has no conflicts of interest to declare.