The BWHS proves that systemic racism is a measurable medical reality, not just a social theory. By turning 30 years of data into policy change, it sets the gold standard for research that actually saves lives.
Deep Dive
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Deep Dive
The BWHS at 30 (and counting!)Added:
webinar will last approximately an hour.
Just do if you have any questions during the presentation, please click the Q&A button at the bottom of your screen.
And if you have any technical problems, please click the chat but um button and let us know and we will try to help you troubleshoot.
Okay, so let's let's begin.
So um just also note that we will have time for uh question and answer um from the audience. Again please use the uh the Q&A button um and we will uh try to get to as many questions today as we can.
So for today's presentation um I'm going to be joined by my colleagues uh Dr. Kim Bertrand, Dr. Eddie and Holder and Dr. Lisa Barnes. Uh and as I mentioned, we will have time for Q&A. Uh we will talk about some of the future directions with the study and uh then wrap up.
I first want to acknowledge uh the BWHS leadership. Uh joining me on this team is Dr. Julie Palmer and also Dr. Kim Bertrand.
And to uh shout out um our amazing advisory board made up of clinicians, researchers, uh just a fabulous group of women who have dedicated their work to women's health and black women's health in general in particular say.
So before we move on to study results and we will be sharing some of those I I just wanted to give a uh a a brief overview of uh the history of our study.
Uh certainly it's been uh it's been a minute since uh you've all joined and uh a little refresher uh is always good.
So in 1995 when we began 59,000 of you completed a postal questionnaire. Now, this postal questionnaire was not for the faint of heart. It was 12 pages, had really detailed sections, diet in particular.
Uh, it came without warning. Um, and but you you completed this. Um, most of you were subscribers to Essence Magazine.
Some of you were also members of professional organizations like the National Black Teachers and the National um, Black Nurses Associations. And others of you were family and friends of individuals who received that first questionnaire and uh nominated you or maybe passed the questionnaire on to you directly. But that's how you became enrolled in this study. Uh back then um our youngest participants were 21 and our oldest were uh 69. The the median or middle age was about 38 years old. And for every um 2 years since 1995, we have uh updated your information um through either another postal questionnaire or even online questionnaires.
Um you're you are an amazing group. 75% of you have completed at least 10 questionnaires over this span of time.
So including uh that first questionnaire in 1995 um we've had about 15 questionnaires that we've mailed out and so that uh that threequarters of you have filled out most of those we are very grateful.
So today uh in 2026 we're a little more mature. I won't say older, we're just more mature, right? Our youngest uh participants are 52. Uh we have centinarians in our midst midst with at least 11 of them turning 100 this year.
Um we our active participants are uh down to 46,000 uh women and and I just want to take a moment to acknowledge that in the decades since we began together um we have um lost a number of our uh participants and many of our sisters have passed away. uh but they left us with an incredible um legacy and uh we are forever grateful to their contribution um while they were with us.
So the black women's health study is truly uh a national study and our participants uh represent all regions of the United States. Uh we also are a fairly um international study now in that our participants are located across the globe uh in mostly within the Caribbean and Central America um and and certainly on other continents including Africa, Asia and Europe.
So as I noted in just uh the a couple of slides previously um questionnaires are the main way that you share your information with us. Um these uh questionnaires are available both online and through the postal service. And the main themes of the data that we tend to collect, you know, include body size measurements, um, uh, lifestyle factors, uh, so a diet, sleep, um, what we eat and drink, um, our physical health, including, um, reproductive history, and our medication use. And uh in as early as 1997, our first follow-up questionnaire, we began asking questions about um stress, particularly around uh experiences of racism and other types of stress and trauma that we explore in our daily lives. And we have uh um published many times on the the really bad delotterious effects, the bad effects of racism on our health. And some of that we will talk about today. Um as other hypotheses emerge or we learn about other areas and basically how our cohort is changing in its characteristics, we have moved into other areas uh environmental exposures um oral health but and as you'll hear later on during this presentation around memory and cognition as we um we all get older.
We've also asked lots of questions about diet. Uh so here we've included uh dietary assessment on four of our follow-up questionnaires. Uh if you recall, these are some very detailed questions. Um uh you know, wanting to know how often, the serving size, um uh you know, trying to get at exactly what it is that you're you're consuming and ways that we can um link or look at how what we eat, how that affects our health. Uh but because these questions are so detailed, they're way too much to put on every questionnaire. Therefore, we put them on occasional questionnaires.
We also collect additional information to help contextualize the data that you share with us. Uh so for example, um information from the Census Bureau helps us to understand um the communities where we all live and work uh and the environ how we interact with our environment. um information from the Environmental Protection Agency um for example can help us understand the things that we uh breathe um the things that we are exposed to um every day. So um these are these are ways that we enhance the data that has been um that you have uh so graciously shared with us.
Um, I'm not sure how many rec real realize, but the Black Women's Health Study is primarily funded through the National Cancer Institute, which is part of the National Institutes of Health.
So, cancer is one of the main um outcomes that we study. However, we also study a number of non-cancer conditions.
Uh, these are conditions that occur by themselves or can co-occur with cancer.
Uh so um over the years you may have been invited to take to take part in some of the substies related to these uh conditions both cancer and non-cancer.
So regarding the substies over the past several years, uh in order to get additional information um around a particular condition, we can't put a lot of questions uh on the questionnaire uh simply because of of size and focus. But we may come back to you afterwards and ask for you to complete a second questionnaire or a supplemental questionnaire. We might also ask you whether you'd be willing to uh provide a a biological sample. So, we've collected mouthwash samples from women. We've also collected blood from women. Um we at one point we even invited uh women who were local to us here at Boston University to come in and have a dental exam so we could understand um oral health uh a little bit better. So we thank you for participating in these uh these many studies over the years. And uh at present um we have um some new uh studies including the cognitive health assessment, the environmental health study and lung cancer screening. So you will hear about these studies uh in a few short slides, few slides from now I should say. And then this brings us to the 2026 questionnaire. I want to say this early and I'm going to say this again. Um but uh your information uh remains vital to us. You have done such a wonderful job in sharing your information. Our next questionnaire will be available uh in just a few weeks in June of uh of this year. Um when our web version is available, many of you enjoy filling it out on online. Uh it you know you don't get extra mail in your mailbox um in your physical mailbox. uh but this will be available in June. If we have your email information, we will send you the link for that. If we don't have that at the end of this presentation, I will show you how you how and where you can update that information with us. Um if you prefer to fill out a paper questionnaire that will be mailed um at the end of the summer, beginning of the fall, and so around August or September or September, you should receive the paper version. Uh the themes of this questionnaire much like those of past will involve again lifestyle um questions about uh preventive health um whether you engage in screening um you take vaccines or you you receive your vaccines again your medical history and medication use uh sleep quality um aging and also again access to medical care and trust in the health care system.
Many of these themes are have been brought to us by you. So we thank you for sharing your ideas. We thank you for uh emailing us, for writing us and telling us the things that you would like to be um seen uh researched and addressed in our study.
So at this time I'd like to turn us over to my colleague uh Dr. Kim Bertrand who will talk about some of the recent findings from the Black Women's Health Study. Uh Dr. Bertrand.
>> Hello. Hi everyone. Can you hear me now?
>> Yes.
>> Pardon? Um, okay. Thank you so much, Dr. Kosier. Um, I'm excited to share just some of our recent um, project findings um, that we thought might be of interest to you. This is just a really just a snapshot of all the research that the faculty here have been working on. Um, so uh, recently we developed a new breast cancer risk prediction model and I want to just tell you what these are.
So breast cancer risk prediction models are used clinically to predict women's risk of developing breast cancer um mainly to help guide decisions about cancer screening between um p uh individuals and their and their phys and their doctors. Um but the models that are commonly used in the clinic today were largely based on data from white women and tend to not perform as well in black women. um meaning that they are they basically underperform in black women who are more likely as you many of you know to be diagnosed at younger ages and with more aggressive forms of breast cancer. So it was really important to develop a new a new model that's really based on data from black women. Um and the black women's health study uh team did uh come up with a new model and they were able to show that this model was significantly improved over existing models and were particularly useful in in younger women. Um and so that they perform really better than the previous models. Um this model is available on our website. I'm sorry I didn't include the link there, but you can definitely look at it. Um and we also showed recently that there may be even more benefits when you add data on um genetic risk as well. Um and the other thing is recent advances in artificial intelligence have resulted in different types of models. So instead of being based on individual risk factor information like family history or reproductive um experiences, these models are really based on just uh mammogram images. So, the X-rays that that women get when they get a mammogram. Um, and new data suggests that some of these models might even perform better than the questionnaire based models. Um, but there's really little data so far in black women and whether these mo these AI models might work as well in black women. So, we're we've undertaken a new study um using mammograms from more than 10,000 of you who agreed to share your mammograms with us um in looking at validating these these these models um in future work.
Um the Black Women's Health Study has also played a role in in um in reviewing and updating lung cancer screening guidelines. So um you may know that there are significant racial disparities in lung cancer screening eligibility. Um so just as a reminder lowd do CT scan CT screening is underused um just across the board in all racial and minority groups. Um but it's fairly easy and effective at early detection of lung cancer which could reduce u mortality rates by 20% or more.
Um, and these types of screenings are fully covered by Medicare and most state Medicaid and private insurance plans for individuals who meet the criteria. Um, the problem is that compared to white women who have a history of smoking, um, black women are much less likely to meet the eligibility criteria. And this is mainly because fewer black women who smoke have um a 20 or more packy year um history of smoking. So pack years is just really the equivalent of smoking one pack of cigarettes per day for one year. So if you have smoked 20 pack years, that's one pack per day for for 20 years. And so that's kind of the main eligibility criteria um that have traditionally been used to determine who should be eligible to get lung cancer screening through these lowd do CTS. Um and the other piece of it is women either this the 20 plus year packing pack year of smoking history applies to women who currently smoke or women who quit within the past um 15 years. Um, but I mentioned that black women are less likely to sort of meet these criteria. And in the Black Women's Health Study, among women who had lung cancer, only 43% of them would have been eligible under the 2021 USPSTF guidelines for lung cancer screening.
Um, and so our colleagues here at the Black Women's Health Study and um, elsewhere performed a study within the Black Women's Health Study to sort of see what would happen if these guidelines were relaxed a little bit. So instead of requiring um 20 or more CAC years of smoking, what if we just take out the quantity of smoking and just have a criteria that is a 20 years duration of smoking. Um and when these criteria were applied um now 64% of women with lung cancer would have been eligible for screening. And these these findings actually led to changes in the guidelines. So um just a couple years ago the national comprehensive cancer network released new guidelines um dropping this requirement for pack years of smoking. Um they also dropped the restriction on um on u time since quitting smoking. Um so these are really you know actionable re results from the black women's health study that have led to changes in policy. So that's that's pretty important. So we thank you for all your participation there. Um we also um want to to really understand um the unique exposures that that black women face. Um so Dr. Kosir mentioned racism and um socioeconomic status. So there's a great deal of evidence that where you live matters for your health. Um, and black women of all income levels are more likely to live in economically disadvantaged neighborhoods and more polluted neighborhoods compared to white women. Um, and of course this is in part and uh majorly due to the history of red lining and racial segregation um in the United States. Um so but we know that these that living in less advantaged neighborhoods can increase risk of several diseases. Um and among never smokers in the black women's health study, we did see that women who lived in these more um disadvantaged neighborhoods had higher risks of lung cancer. Um even after adjustment for individual level individual level markers of socioeconomic status and um and smoking history. So, we've seen similar associations for other types. You'll hear a little bit more about breast cancer later on with um um with Dr. Holder. Um but these and we've also seen it with multiple myyoma um and other non-cancer outcomes as well, suggesting that contextual factors within neighborhoods are really critical to understanding disease risk.
So with respect to experiences of racism, we've asked you on several questionnaires um to to let us know, you know, how do you experience racism in your job, in housing, and with the police? And um you know, maybe not surprising, um even though race is a is a um a a social um a social variable, it's not really a biological variable, the physiological effects of racism are real. um and biological. And so what we've seen is that women who report more experiences of racism in these domains at higher risk of diabetes, coronary heart disease um and stroke. And we further showed that these factors such as neighborhood disadvantage and experiences of racism may also affect um memory and dementia like Alzheimer's disease. Um and so experiences of racism were associated with worse cognitive function. neighborhood disadvantages associated with increased risk of um Alzheimer's disease and related dementias. So these research findings really highlight the critical importance of understanding the social determinance of health um and how how these might in influence disease risk and you know pointing also to the opportunities for disease risk reduction um with respect to for example community reinvestment which may offer an opportunity to reduce the increasing burden of disease among black women.
Um and then something that I think has been of interest to a lot of participants is the um exposures related to chemical hair relaxers. So we know that black women are disproportionately exposed to harmful chemicals not only in their environments but also in personal care products. So chemical hair relaxers are um heavily marketed to and commonly used by black women to straighten their naturally curly uh or textured hair. And of course this is in part to conform to euroentric beauty standards um but also may be used by women um just to manage their their hair on a daily basis. Um but these products are poorly regulated and really already known to contain thousands of potentially toxic ingredients including known carcinogens and chemicals um that may disrupt um estrogen and endoc other endocrine disruptors. So, in the Black Women's Health Study over many, many years, we've been investigating the health effects of exposure to chemical hair relaxers. And we've so far um seen associations for women who had long-term use of chemical hair relaxers had higher um chances of developing uterine fibroids, higher risk of estrogen receptor positive breast cancer, and more recently, a higher risk of uterine cancer. Um and and these these findings um are supported by findings on other studies as well. Um and I think really continue you may have seen on the most recent questionnaire we've asked now about more about chemical hair relaxers and I think the next step would be to look at whether stopping use of these um may improve health effects.
Okay. So I'm going to turn it over to Dr. Eten Holder um who's going to tell you a little bit about the new um or current environmental health um research that is going on within the Black Women's Health Study.
>> Thank you, Dr. Bertrand. Hello everyone.
All right. Just want to make sure I'm pinned so you can see me as I'm talking.
New to the Black Woman's Health Study.
So, I'd like to take a moment just to introduce myself.
Oh.
Yes. Want to try to share again. Um, >> hi everyone.
So, >> sorry about that. Zoom kicked me out, but that's all right. How can I let Zoom stop us from being great today? One moment.
And I just want to take a moment to thank the participants who are putting their questions uh into the Q&A. Um uh thank you.
>> All right. How am I looking now? I bet.
All right. Thank you, Dr. Koser. Thank you everyone. Thank you for your patience my little technical hiccup. Um so as I was mentioning, I'm relatively new to the Black Women's Health Study.
So I just wanted to take a moment to introduce myself. My name is Eton Holder and I'm a postoc uh with the black women's health study and I started close to four years ago now. It'll be four years in July. And I remember when I first started I was eager to get involved and I actually helped facilitate uh the webinar at that time.
So I'm very excited to be here today to share some of my own research that I've had the privilege to conduct with in the Black Women's Health Study. So thank you all for your contributions and for participating over these past 30 almost 31 years. So today I wanted to talk a little bit about the socioenvironmental influences on health and some of my work which focuses on breast cancer. Um and so my research I'm really hoping to improve the health of black women and in part uh by reducing breast cancer health disparities. So to set the stage, let's take a look at the current breast cancer health disparities statistics.
And so here we're looking at a graph that depicts the rates of new breast cancer diagnoses indicated by the blue bars and breast cancer mortality rates indicated by the red bars among black and white women. And as has been well documented and as we know uh black women are less likely to be diagnosed with breast cancer as compared to white women. However, when we look at mortality, the story changes. We see that overall there's a 40% difference um in the mortality rate between black women and white women who have breast cancer. And so, we're seeing that black women are diagnosed relatively less often than white women, but they're more likely to die from their breast cancer.
And so, that begs the question, why? And that's part of my work is hoping to hopefully understand what this difference entails, reduce the health disparity, and hopefully reduce the impact of breast cancer for all women.
One thing that I'm interested in learning about further as it relates to breast cancer, but other health conditions in general, is our environment. So, our environment is made up of several different things, including the community and social conditions in which we live. That can be income and financial stability, educational opportunities, or experiences with chronic stress, discrimination, and racism.
It can also involve different pollutions and toxic exposures such as pollutions in our air and our water environments.
what we're exposed to with respect to industrial pollutants and traffic related exposures and chemical products and consumer chemicals and consumer products such as you know the things we're putting on our body, our soaps, our lotions, our hair products, the chemicals in those products and how that can impact health.
Additionally, our environment is our physical surroundings. It's our neighborhood. Um it's the housing quality and safety. It's our access to different green spaces and parks and access to healthy foods.
And so some of my initial work uh with the black women's health study as a postoc was to look into the neighborhood environment and see that see how that was related to breast cancer survival.
So I'd like to share two studies um from the black women's health study looking at neighborhood conditions and breast cancer.
So here this is my colleague Dr. Barber.
Um, Dr. Barbara and I conducted research within the Black Women's Health Study to investigate how neighborhood disadvantage, uh, which is living in communities with fewer resources and opportunities that support good health, um, impact breast cancer. Dr. Barbara looked at neighborhood disadvantage in relation to risk of developing or being diagnosed with breast cancer. And then I further looked at among women with breast cancer, how neighborhood disadvantaged impact survival outcomes.
And what we found what we found was that living in disadvantaged neighborhoods was associated with an increased risk of er negative breast cancer. Um and er negative breast cancer is a more aggressive form of breast cancer. Um which black women are more likely to be diagnosed with. And we also found that in my work, women with breast cancer who were living in areas of disadvantage were at a higher risk of passing away from their breast cancer as compared to women who lived in areas that had more resources and more opportunities to support health.
But further at the Black Women's Health Study, we're interested in going beyond our physical environment and thinking about the chemical exposures that black women are uniquely exposed to. And that brings me to the study. It's a pilot study on environmental factors in the black women's health study. So, here we're interested in how the environment affects our health. Um, and to look further into this, we started a pilot study using wristbands. Some of you may remember receiving the silicone wristband in the mail. It's similar to my activity watch wristband. It can pick up some of those chemicals that we're exposed to on an everyday basis. And this will help us to understand how the environment influences health outcomes.
This pictorial on the right just shows some of the environmental chemical compounds that are in air pollutants, personal care products, other products that the wristband has the ability to absorb. We can then take those wristbands um and have them analyzed in a special lab where we can then understand the amounts of each of the chemicals and look at it in relation to certain health outcomes or look at chemical profiles among women who have certain health conditions to see if they have different levels of the chemicals compared to women who may not have those health outcomes. So the wristbands can pick up different things such as uh VOCC's or volatile organic contaminants, uh flame retardant contaminants, those contaminants again in the personal care products, so the lotions that we use or hair products we use um and pesticides for example.
And here is uh what our pilot study entailed. Um, we had our navy blue wristbands um and participants wore them for a week. They also sent back um a questionnaire. I'm happy to announce that we've completed our wristband collection. We had 4,14 women who participated um in our wristband study and as this is a pilot study to date, we have 816 wristbands that have been sent to the lab to be analyzed. And so they're currently um at the lab. They'll be analyzed and we'll be able to receive the data back and conduct some further studies using the wristbands using the chemical findings from the wristbands in relation to different health outcomes.
And so as part of my work, I'm always thinking ahead and the Black Women's Health Study um in general is always thinking ahead about what the public health impact is of our work. And I think there's some key some key in informational findings especially from the work looking at socio environmental context in terms of public health impact for the future. I think one of those important um public health impacts is policy changes especially when we think about the chemicals that are allowed in our environment as well as our personal care products. We want to be able to use products for our hair, for our skin, and not worry that the chemicals may be bad for our health. I think some of this research can lead to important disease prevention, you know, reducing the health disparity, improving women's health, and most importantly, improving quality of life uh for black women and survival outcomes after a diagnosis.
I want to thank you all for your participation um and your contributions to the Black Women's Health Study over the last 30 31 years and for your attention during my presentation.
Um I'd like to now pass it off to Dr. Lisa Barnes who will be sharing more about the cognitive health study within the Black Women's Health Study. Thank you.
>> Thank you, Dr. Holder.
Um we just started. Can everybody see?
>> Am I good?
>> Looks good.
>> Okay, great. Thank you. Okay, good, good afternoon, good evening wherever you are in the world. Um, I'm uh Lisa Barnes.
I'm a neurosychologist in Chicago and um also new to the Black Women's Health Study. Um I am really happy to uh on behalf of the cognitive health substudy present some background information on why we started the study and what uh what's included in the study.
So the sub study is about cognitive health but one important consequence of poor cognitive health is dementia. I know that we've all heard about dementia and may even have had people in our families with this terrible disease, but let's start with the general definition to all be on the same page. Dementia is the umbrella term used to describe a range of symptoms associated with cognitive impairment, including a chronic loss of memory, language, problem solving, and other thinking skills. And these losses have to be severe enough to interfere with daily functioning to be considered dementia.
So dementia is the general term for loss of cognition. But there are several diseases under the umbrella that cause dementia. And as you can see, Alzheimer's disease is the most common cause of dementia with about 50 to 75% of diagnosed cases being um Alzheimer's.
But you can also develop dementia from having uh strokes. We call that vascular dementia. You can even have multiple causes which we call um mixed dementia.
So dementia is a growing health concern for our our population. Today one in eight older Americans over the age of 65 um are affected by Alzheimer's disease and other dementias at an annual cost of more than $200 billion. And with the projected population increases, especially in the oldest age groups, it's thought that around 13 and a half million individuals in the US will have Alzheimer's by the year 2050 unless we can find a cure. So prevention is a public health priority.
There are important disparities with Alzheimer's uh dementia. We know that women have a higher lifetime risk at both age 45 and 65 shown um at in the graph on the the left. Um and if you look at the graph on the right um here, I don't know if you can see my cursor.
Um this was data from a study of um over 270,000 healthc care members in Northern California. And in that study, they had data on six different racial and ethnic groups. And what is shown is that African-Americans, represented by the purple line, had the highest incidence of Alzheimer's dementia compared to all other racial and ethnic groups. A finding that has been replicated in other studies in other parts of the country.
So, a growing body of evidence suggests that African-Americans are two times as likely as white Americans to have Alzheimer's dementia or another dementia. But the reasons are not well understood. We know that cardiovascular diseases and lifestyle risk factors like high blood pressure, uh, diabetes, and physical inactivity play a role in Alzheimer's. And these factors also tend to be more prevalent in African-Americans.
So one hypothesis is that higher rates of cardiovascular disease in African-Americans could be the reason for the higher risk of Alzheimer's.
But is there another reason? Could there be another reason? We know from decades of public health research that most of our health is influenced by factors outside the walls of a hospital. In fact, up to 40% of our health is due to social and economic factors. More so than our genes, more so than clinical care, even more so than our own individual health behaviors.
And as we've heard in earlier presentations, race is a social construct that's rooted in cultural identity and shaped by historic events.
And we and others believe that the reason for the disparities, at least one of the reasons for the disparities in dementia may be due to what we call social determinance of health. That is the conditions in which people are born, grow, work, live, and age. And it may not be the conditions themselves, but rather the systematic and unjust distribution of these conditions. So the fact that the economic, social, and environmental conditions that are needed for health are not evenly distributed across populations could be the reason for the disparity.
In other words, as we've heard in prior presentations, you have the halves and the have nots. And that could be one of the reasons.
So I'm in Chicago and I run studies in Chicago and o older black Americans. And in one of my studies we have been measuring some of these social determinants. And in one study we found that those uh older adults who reported attending legally desegregated schools in the south as children performed more poorly on our cognitive function tests when they were older. So in their 60s, 70s and older, compared to other participants who attended legally segregated schools in the south and compared to participants who attended schools in the north.
In another study, we found that African-Americans who reported higher perceived stress, essentially that their lives were unpredictable, overwhelming, and uncontrollable, had faster rates of cognitive decline on our tests. So shown with the blue line compared to those who reported less perceived stress shown in the green line. And this was uh true whether we asked about you know historic factors related to discrimination or even more contemporary stressors that people face today.
Closer to home, data from the Black Women's Health Study was published in 2020 on the relationship of experiences of racism and subjective cognitive function. Subjective cognitive function is the perception of your thinking skills. So, we might ask you to rate whether or not you think your memory is worse than it was 10 years ago. That study used questions from a structured telephone interview for dementia assessment and found that experiences of daily and institutional racism were associated with lower subjective cognitive function in over 17,000 uh black women over the age of 55.
And women who reported the highest levels of daily or institutional racism were estimated to have more than two and a half times the risk of poor subjective cognitive function as women who reported the lowest levels.
So I hope I've convinced you that there is a strong precedent and a need to understand how social determinants and early life stressors affect actual cognitive aging in black women. So, we wrote a grant um to measure cognitive function in the Black Women's Health Study and were funded in 2024 by the National Institute on Aging. And this sub study includes about 2500 participants who were at least 55 years of age, had donated a blood sample and agreed to have it used for research, and also agreed to be tested over the phone once a year for up to 5 years. The study has four goals. Number one, we will measure cognition with a brief battery of neuroscychological tests over the telephone. Number two, we will measure brain proteins, what we call biomarkers, in stored blood and examine their relationship with cognition. Number three, we will assess the relationship between stress measures that's been collected in the black women's health study since 1995 and relate that to cognition. And finally, we will determine the genetic profile of participants and combine the genetics with the biomarker data to see what might predict cognitive decline.
There has been enthusiastic interest in the study and we've already completed the first interview on uh 2,554 women and we're currently completing the second interview um having completed more than 1,800 interviews to date. We expect to be done with the second interview uh before the end of the summer and we'll be reaching out to schedule the third interview very soon.
You can see we have a nice age distribution um with most women being between 55 and 74 years of age and a nice regional distribution across the country. So on behalf of the entire cognitive health study team, I want to thank all of the women who are participating. We look forward to continuing our partnership with you and together learning what are the factors that affect black women's cognition as we age. Thank you so much for your attention and now we can turn to Q&A.
>> Thank you so much uh Daffy Barnes. Thank you for all the presentations. Um so just to to start us off, I've been looking um at uh the questions coming into Q&A. So I'm going to just throw a couple of them out there just in no particular order and ask my colleagues to uh to jump in. Um, one of them uh I would come I think to you Dr. Holder first of course and about it's about the wristbands. Um, a couple of people have asked uh about um the the number that have been sent on for um analysis versus the total. Uh so if you want to um say something about that.
>> Sure. Happy to. Thank you for the questions. Um so yes we have received a total of 4,14 wristbands. Um as it was a pilot study we had the funds to initially look into the chemical compounds and exposures collected on 816 of those wristbands. Um so as we are able to obtain more funding we the goal is to have all 44 wristbands analyzed and that'll allow us to do robust research. Um but as a pilot study we're starting with our initial 816.
>> Great. Thank you. And then one more before I I switch from you and it was about um some of the exposures and one in particular was um you know picking up workplace exposures.
>> Yeah. So the wristband is able to pick up different chemical exposures in your air as well as in your environment. So whether that be um at work or if you go to the gym um in your home environment.
Um so some of those you know compounds can be like different it's the class is called um polyylic aromatic hydrocarbons which is a bit of a mouthful but like that's for example formal commonly found in car exhaust wood smoke. Other types of um polycllorinated compounds can be found in building material. So maybe that would be something that would be picked up on at work if you're working in a specific building. Um or in soil contaminants due to improper disposal. Um so there are different chemical compounds that can be picked up by the wristband no matter where you are while you were wearing it.
>> Thank you. Um then um to uh Dr. Bertrand um around um around some of the hair uh relaxer studies. Um just uh some you know whether there has been anything around like hair toxins from braids or um other dermatological issues um associated with um hair relaxer use.
Yeah, that's a great question and of course it's um been in the news recently because I think the US consumer products um report came out and showed that some of these um toxins especially the endocrine disruptors like phalates um and parabens have been detected in synthetic braids um that people are purchasing. Um, and we did not yet, we have not yet collected data on um, type of braids people use. We've asked people about hairstyles in the past. And so I think that is really something important that we should start to think about including um the data that I'm aware of also come from the Silent Spring Institute suggesting again that just sort of these off-the-shelf envir uh environmental toxicology studies show that the presence of these chemicals in these in in hair extensions and braids.
Um what we don't know yet is even though those chemicals are there in the braids and there's a potential that people could be exposed like maybe through inhalation I not aware of any literature that has actually linked exposure or use of braids and these other hair hair extension products to increased risk of disease. So, we haven't quite made that epidemiologic connection yet to disease risk. And I think that's something that that absolutely needs to be done because we do know from other studies that these chemicals when um people are exposed to in high quantities can affect health. Um but we just don't know that yet for braids specifically or synthetic hair products.
>> Thank you. Um for Dr. Barnes, um one question. Well, first there was someone shouting you out from Chicago, right?
And also um uh are you still accepting uh women for the dementia study?
>> Oh, you're you're muted, Dr. Vines.
>> Great, great question. Um no, we aren't accepting anymore. We reached our um baseline enrollment. The goal was 2500 and we actually have about a little bit over 2500. Um but hopefully um we will be refunded when the study is done to look at you know more indicators of cognitive function. So stay tuned.
>> Okay.
Um uh so another question um and um we can all weigh in but uh one was how are participants selected to participate in the wristband in cognitive studies and also in a similar vein for any of the sub studies and I can I can just start in general in saying that um there are there were some studies where really everyone was able to participate. So when we were collecting you know mouthwash samples we pretty much sent to everyone um we invited um a number of women for blood study um with that there was there were some age um restrictions.
We were looking for you know slightly older women um to begin with that study.
Um others are dependent on um a particular condition that we might be looking for a particular exposure for example. Uh and so um it can vary quite a bit but um there usually is uh some thought that goes into um how we proceed. Um I I will you know for u the wristband and the dementia studies um anything about >> yeah for the cognitive health study was very similar. We needed older women. So we uh we looked at uh participants who were at least 55 years of age because you don't really start seeing changes in your cognition until you get older. Um and also you had to have donated blood because we were going to be measuring um biomarkers in the blood and also genetics. So people who had donated blood for another substy.
>> Okay. And for the wristband project, um, for our criteria, some of it included, you know, we were interested in getting a broad span of the United States. So, we tried to spread out the 4,000 wristbands across the US. Um, as well as women. Um, as Dr. Barnes said, it was part of the blood sub study. So, we can do some cross collaboration with some of our sub studies. Um, so that was some of the included some of the criteria.
Thank you. Um uh another question for you Dr. Bertrand um was regarding um breast density. I know that this is um an area that you have studied. Would um um would you like to say something about that?
>> Sure. Thank you. Um yes, so we um one of the very first research projects I worked on here at the Black Women's Health Study was a study of breast density and breast cancer risk um in the Black Women's Health Study. And um many of you may have even participated in that and not even really remember it.
But we um we tried to collect uh screening mammograms from um participants in the black women's health study. I think we invited like 300 sorry why am I saying 300? um 30,000 nearly 30,000 women um who were screen you know of mamography screening age at the time um and who had had a screening mammogram um after 2008 which is when most of them in the United States became digital um we just wanted to work with the digital data there's really very few film mammograms happening nowadays um so there were data from white women that suggested um actually pretty robust It's not just suggested, but it's actually higher breast density, which represents the proportion of your breast tissue that is um epithelial or strummal tissue versus fat or atapost tissue. Um it's a really wellestablished risk factor for future breast cancer risk in in many many populations um white women, women of uh Hispanic women, um Asian women.
Uh, and yet there hadn't been many studies in black women to corroborate those associations. Um, and as you many of you know, you're starting to get notifications from your radiologist and your doctor that when you have a mamogram, you're told whether or not you have dense breasts or not. And um, dense breasts are not, it's not um, a disease at all. It's just a phenotype. Um, about 50% of premenopausal women have dense breasts. Um, so it doesn't necessarily, even though it's a strong risk factor for breast cancer, it doesn't mean, you know, you're doomed to get breast cancer, but it is something that needs to be discussed in consultation with your provider. Um, so when we collected these mammograms from about 10,000 women in the black women's health study who had, you know, we were able to find their mammograms, um, we were able to measure breast density on those mammograms and we did see, you know, we we replicated the findings from white women and saw a significant increased risk of breast cancer for those who had the most dense breasts. Um, so those findings have been published. I'm happy to share the publication um, if you're interested. But yeah, it's it's something that needs to be talked about with your provider because it may it may mean depending on what other risk factors you have for breast cancer. It may mean that you're recommended to get supplemental screening beyond just mammograms every year.
>> Great. Thank you. Um I I want to um uh switch uh to a topic that is on everyone's mind. Um and that is certainly the current federal um environment and about funding and going forward. And um so I'll start just by saying that um next year is when we the the study is up for renewal. Uh obtaining follow-up funding is never easy uh in the best of circumstances. Uh but we we plan to um resubmit and put forward a great application to continue uh funding this research going forward.
Um it's been a tough year for a lot of our colleagues out there. Uh but um it's also um we have continued to thrive um with this study. So, as far as as we're concerned, we are we we we plan to continue um doing our best. Um um would anyone else like to uh do I I miss anything? Um anyone else want to add?
>> Um maybe I'll just say like, you know, yeah, it is it is tough and it's right to be concerned. Um we are not stopping this research. we are moving forward in any possible way we can. We think this research is critical um important and relevant and um you know there may be like a little bit of a blip in federal funding. There are other sources of funding that we are aiming for like foundations although obviously NIH has you know the large is the largest funer of biomedical research um in the United States. Um, so I I think there's hope and there's optimism. Um, but you know, being aware I think people are not, you know, don't really realize how much it costs to do this type of research. Um, so, you know, any advocacy that that you can make to your local representative, I think, is helpful. Um, but we're not we're not planning to stop anytime soon.
>> Yes.
and and uh and so that also answers one of the questions that we were asked before. Does this study have an end date? Not as far as we're concerned, right? As long as you're willing to be part of it, we're willing to keep it to keep it rolling. Um I think just in the interest of time because I know some of you will have to drop off um I'm going to um just move us uh forward uh in our um presentation and um to uh let um people know that we we will try to address as many of the questions that you've asked um you know perhaps we'll we'll post them online. Um also this is being recorded so we will post the video um once it's available. Um but but moving forward I just wanted to one of the questions again is um what about the next generation? So perhaps health study we are continuing with our cohort and as I said we are the women who are currently you know ages uh 52 to 100.
That cohort will continue. Um, one of our colleagues, um, uh, Dr. Lauren McCulla, who is also a member of our external advisory board, uh, is a co-leader of the voices for black women, um, through the American Cancer Society.
This study has a goal of enrolling younger women, so women who are between the ages of 25 and 55. So if you have uh an interested daughter, cousin, friend, sister, granddaughter, uh this would be an opportunity for them to be involved in research. And this research although it's not affiliated with with our study directly, it's not affiliated with Boston University where we are located, it it does share the goal and commitment of exploring and examining black women's health. And so um we uh have the website here. Uh you can also Google this. Uh but I I would encourage you um to uh that this would be uh really something an opportunity for the next generation.
Also, as we um are coming to a close, I want to acknowledge um Dr. Lynn Rosenberg. Uh she is the founding um black women's health study investigator and she is um going for a welldeserved retirement at the end of this month. Um Dr. Rosenberg was in the first cohort of non-f physicians to receive a doctorate in epidemiology from Harvard University and within that class she was one of only three women uh who went on to do amazing things. Uh since then her research has been in the areas of cancer epidemiology, cardiovascular epidemiology, and uh drug or medication epidemiology with an emphasis on women's health, particularly that of African-American women. She's carried out multiple studies uh for risk factors for cancers um including cancer of the breast, cervix, and colon, and for heart disease. Uh she is the founding PI of the Black Women's Health Study um which you know quite well. and uh certainly during her over 49 years as a member of the faculty at Boston University, she has amassed 523 peer-reviewed publications and her work has been cited um nearly 33,000 times. Um I speak for myself and perhaps my colleagues as well, but she has been a mentor, a mother, and a friend uh to many of us on this study and beyond. and um I know that she we will we'll continue to see her but uh she has goes to a well-deserved retirement and we thank her for her tenacity and pushing this very important research forward um that we are all part of now.
Um just some some uh housekeeping as we get ready to close. Uh please stay in touch if you've moved recently. um let us um know your current address, update your address, your email if email is the best way to get in touch with you, phone number, etc. We will be sending the 2026 questionnaire um by by mail at the end of the summer. Um it will also be available next month by um online. So having an uh email address uh would be helpful um if you would like to uh receive and complete the questionnaire that way. Um if possible add us to your contacts list on your telephone um so that you we can be recognized on caller ID. Otherwise we show up as Boston University School of Medicine or 617 area code which you may not want to pick up. S uh also um when we give follow-up phone calls, sometimes you call us and we have to call you back. Um just make sure that your um voicemail box uh will accommodate our incoming call. At the bottom, uh the different ways to contact us by telephone, email, on our website, and even on Facebook. Um so, um with that, I want to thank you um participants for all that you have done.
um you really are uh uh you you are leaving an incredible leg legacy uh for your daughters, your granddaughters, for for black women everywhere. And um none of this none of the results that we um we find uh would be possible uh without you. And so before you go, I want to turn this over to our behind thescenes staff. And I want to give them a shout out as well. There are a number of BWHS staff. Um I won't get all their names, but I want to shout out Dia Russell, Renee Pitman Williams, Maria Pzel, Carolyn Ki, and the many others that keep this study running. And um some of our participant, some of our I should say our our um staff have a little gift for you. Um a visual gift. So I'm going to turn this over um to the um the crew behind all of this. One second.
Give us give us one moment. Zoom has not been kind to us today. But down.
Even without sound, I hope you get the sentiment there.
Thank you. Thank you all for attending today.
>> Thanks everyone.
>> Thank you. Bye bye.
>> Thank you. Take care everyone.
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