Episode 56. 18:53 Working Tools Series - 10k Families Study

In this episode, Dr. Jen Poynter and Dr. Heather Nelson, leading experts in medical research at the Masonic Cancer Center, join us to discuss the "10,000 Families Study." We cover why it’s so important for you and your family to participate in this study, and how members of the Masonic family (and outside friends) from across Minnesota, North Dakota, South Dakota, Iowa, and Wisconsin can help shape medical research and health, now and into the future. 

“It was really with the generosity of the Masons and the gift to the Masonic Cancer Center that helped jumpstart us and put us in a great position.” -Dr. Nelson 

Check out www.10kfs.umn.edu for more information and how to sign up.  

Transcript

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Hi again everyone. It is another episode of Minnesota Masonic Histories and Mysteries. Revisiting the 1853 series today to discuss the 10, 000 Family Study in Minnesota. Excited to be joined today by Heather Nelson and Jen Poynter. Heather's from the School of Public Health, and Jen is with the Department of Pediatrics at the Masonic Cancer Center here at the U of M. Thank you for being here. Rather than me just reading it off the website, could you tell us a bit more about the 10, 000 Family Study, what it is, and how it came about? The 10, 000 family study is a new family based study that we've been working on at the Masonic Cancer Center for the past five years. It's what we call a cohort study where we follow a group of people over time to try to understand more about genetics, environment, lifestyle, and how that impacts health. And in particular for this study, we're focusing on cancer. So one of the things we did when we started planning this study was thinking about Minnesota Who's unique here and not typically included in research studies. And that includes older individuals, rural individuals, uh, people from underrepresented communities like new immigrants. And we also thought about what are kind of the exposures we're concerned about in Minnesota that are. Not clear for their health impacts, and that includes radon, which we know is a definite lung carcinogen, but there's outstanding questions about whether it's associated with other cancers or other health outcomes. PFAS, perfluoroalkyl substances, and they're included in lots of different products are ubiquitous in our environment, and there's real concerns and uncertainty about the health impacts of those exposures. Can you give an example of what that is? P fosses? It's Teflon, but it's also in other things like your dental floss. Oh, my gosh. So, um, it's and they persist a long time in the environment, and we're not here to say that these are definitely causing cancer. The, the problem is we don't know if they are, and so it's important for us here in Minnesota to start asking those questions. And then the last thing that we're kind of focused on in this particular time is glyphosate, which is the active ingredient in Roundup. Very applicable to our part of the country. Yes. And when you say this is a cohort study multi year study of health and ideally rooting out cancer causing agents or otherwise. So let's do an example. So a very efficient way to ask if something causes cancer is to take a bunch of people with cancer and a bunch of people without and then ask them questions about what they were exposed to. The problem with that is that people remember things differently if they're sick or not sick. So really the ideal gold standard way to ask these questions is just to take people, pre living people, and follow them forward in time. So ask the questions at the beginning and then see what happens. And so that is what a cohort study is and that's what we're doing here. How many years are you into this so far? We started recruitment in 2017. So we've been working on this for about seven years so far. Um, and our current funding from the National Cancer Institute started in 2021. And how's the participation been? It's good so far. We've done a lot of events. We have people participating from all over Minnesota. And we have about 3, 400 people who've already signed up for the study from about 1, 200 families. And if you could wave the magic wand, how many people would be ideal to have on the roster for this? Ideally, we'd like to have at least 10, 000 people for the study. And that's where our listeners come in on this, the opportunity to participate and share in research for finding the cause and ultimately the treatment for cancer. And especially in something that is focused, really the focal point of this is right here in Minnesota and will branch out beyond. Yeah, I think that's right. And, you know, when we think about research, a lot of times what we're thinking about is cures. And This study is really about not getting cancer. So how do we figure out what causes cancer? So people don't have to get it And so, uh, we're really needing partners, collaborators in the community. It's it's citizen science, basically come join us to help solve these problems. Heather, tell us a little bit more about your background in school. Where'd you grow up and how did you end up ultimately at the Masonic Cancer Center? Great question. So I grew up in Fargo, North Dakota. essentially grew up on campus. So my father was a professor of agronomy at North Dakota State, so I got a lot of exposure to science. So. I didn't think I wanted to be a scientist, but as soon as I went to college, I kind of realized, oh, that's who I am. So I got my undergraduate degree from Hamlin university in St. Paul that was followed by a master's degree at the university of Minnesota in the school of public health and environmental health. So I was really fired up. I'll age myself by saying, you know, the ozone hole really got my attention. Right. So that was, you know, the beginning of me being very passionate about environment. following my master's degree, I went to Harvard University, did a degree in cancer biology and public health, and then arrived at the University of Minnesota in 2007. And how long have you been at the Masonic Cancer Center? Since 2007. Since then, the whole time? The whole time. So you've seen many projects, research, a lot of things evolve over that time, I would imagine. Yes. And I would say, in 2016, in the State of the Union Address, brought up the need for new cohort studies. He sat down and got like, well. What's our pie in the sky dream? Like, if we were to design a study, what would it be? And that's how the 10, 000 Family Study was born. And it was really with the generosity of the Masons and the gift to the Cancer Center that helped jumpstart us and put us in a great position to apply for funding and we were able to leverage that investment into, you know, a 12 million grant. So great to hear that. And we have a lot of listeners in this podcast who are not Masons, may not be members of the Masonic family, but a big aspect of our organization is giving back to the greater good. And that could be at a local level, at the community level, It's really exciting to hear what's happening on a grander scale, starting at the Masonic Cancer Center right here in Minnesota. Jen, tell us a bit more about your background and how you and how you two ultimately came together on this. Yeah. I'm from Minnesota. I grew up in Northwest Minnesota and Kitson County in a little town called Carlstead, which is 30 miles from Canada, 30 miles from North Dakota. My dad is, was a wildlife biologist who worked for the DNR, so he managed that corner of the state. So I grew up, um. With a great appreciation for nature and the environment, um, I ended up getting a biology degree at the College of Saint Benedict, and then, and worked at the Mayo Clinic for 2 years in a cancer research lab, which led me to want to pursue graduate studies. So I went to the University of Michigan for a degree in public health, first, a master's degree, and then a PhD. Um, and I focused on cancer research while I was there and really got invested in trying to figure out better ways to prevent people from developing cancer. I then went to USC for three years to do a postdoctoral fellowship and then, um, came back to the University of Minnesota in 2008 to the Department of Pediatrics. So as we've said, the 10, 000 families study is a cohort study, which means it's going to last many years so that the changes can be seen that happen over time. For a family to become part of this study, a member of that family needs to take an eligibility survey first, and that first member must live in Minnesota and be 18 years of age or older. After that member of the family receives confirmation, families eligible, you're gonna be asked to invite other adult family members and or register kids under 18 years of age. Tell us a bit more about. So can you tell us a little bit about what this looks like? And is this just a case of, Hey, we sign up help with the research and then don't find out anything about it? Or what is that? Like? That's a great question. So one of the let me give an example. it's really important that we provide information back to participants. Right? So you're as a participant. You're just not giving us stuff. It's a partnership. And so one of the things we're doing is household rate on testing. participants. Get back their radon results. They get information on what their radon results mean. And then we have webinars with the health department so that people can specifically ask experts at the health department, what do I do with this test result? So that's one example of how this partnership works. We also have people come in for a health visit for the study, and we collect information like blood samples, urine samples and some other information. And we also provide that information back to participants as well after their visit. For somebody like myself, our listeners who are new to this whole idea of a cohort study, how many are out there? Is this new? Is this going on everywhere in other fields of research? This is fascinating. Yeah, this is one of the main types of studies that we do in epidemiology in public health to try to understand disease burden in populations. So, they've been, you know, it's really the gold standard where we're. Having people give us information or collecting information from people at the beginning before they end up developing disease or other health issues. And so there are a lot of a lot of other cohort studies that have really helped us learn a lot about what causes cancer and other diseases. Um, one that people might be familiar with is the All of Us study, which is currently funded by the National Institutes of Health and is recruiting participants from all over the country, primarily through health systems. So that would be probably the best example. What can you share so far that has been found that has been that light bulb since this started in, is it 2017? Yeah, we're just starting to do our first analyses from the study. So we've been looking at the P fast or the forever chemicals and looking at the levels of exposure that we see in study participants. We've measured these in a few different ways, both through blood samples that we collect from participants. And we've seen from testing results from those that the levels that currently are observed in our study participants are lower than the historical levels that have been seen in other studies, which is good news. And we also are using these wristbands to collect information on PFS, which is a new non invasive way to collect information. And we've seen from those studies that it's pretty highly correlated with what we see in the blood samples. Technology must be on your side with that. That's so cool. Oh, I want to talk about those because it's actually one of the best parts, I think, of the study so far. So, you know those wristbands that you get at a festival or basketball, you know, it's just I walk for blank kind of, okay. So, those wristbands have tiny pores in them. They're made of silicon. They have little pores. And if you prepare them. You know, special chemists can clean them out so there's no chemicals on them. Then we give it to a participant to wear for seven days and the things that they're exposed to in their environment will go into the little pores of the silicon bracelet. And then our brilliant colleagues, chemists, um, the person we're working with is at Duke, can extract those things out of the wristband and tell us what people were exposed to during those seven days. Participants really like this part of the study because it's easy. You just put on the wristband and it says 10, 000 families on it and You know, this is why it's really exciting to do a new study at this time. And it's as easy as that in that case to wear a bracelet and just be exposed to your environment the information that is gleaned out of that could be and is helping find cures for cancer and root causes of other illness. That's right. So we've done some very Preliminary looking at these data and comparing, you know, what's in the wristband, what's in the blood. They capture slightly different things, The 10, 000 Families Project is a study, again, of family health in Minnesota. Participants can sign up to be a part of this and we've talked a little bit about some of the criteria to do so. If somebody wants more information about this, how to get involved and how to participate, where do you suggest they start? yeah, so if people want to learn more about the study, they can go to our website, which is 10kfs. umn. edu, and that has a lot of information about the study, who's eligible, and it also has a link to the screener that people can complete to if they want their family to sign up. I think it's especially impactful for the Freemasons of Minnesota to, Masonic Cancer Center on something like this. And this is not just limited to our members of our Masonic family, but anybody hearing this could participate in this. But this is a research project, one of many that you have on your radar that is seeking, researching and finding cures for cancer and other diseases, and it's all starting right here in our backyard. Amazing. We want Minnesotans to be able to participate. I think sometimes it seems like it's hard to participate in research or it's not meant for me and that's, that's not true. This is really, we want to be representative of Minnesota. And so it's really a problem when, when certain groups don't participate in research, because then findings can be biased and not applicable to everyone. And so, you know, we're trying to be very purposeful of making sure that outstate Minnesotans are included. It's not just people in the Metro. It's really anybody who wants to participate. As one or more family members who can participate and family is defined by you, not us. that's great to know this is something that goes from across the state and even in this region. And you're going to ultimately be providing other health researchers with information that they can use to do more research to benefit health now and in the future. it's all about that infinite timeline as we look at cancer research and medical breakthroughs that this is, uh, So it's really slow, sustainable progress, eyes on the long term health, ideally a cure. I think that's right. And I think you know, part of the reason that the National Institutes of Health realized they needed to do some new studies is that there's missing information from the old studies. For example, that's just even the example of the wristbands like that didn't exist even probably five years ago. So there's all these opportunities that exist with a new study. And I think, you know, a lot of our older cohort studies were focused on populations that were easy to access for research or very comfortable with research. An example is the Nurses Health Study. A lot of what we know about exposures and, you know, the occurrence of cancer happens in that, in that study, but that's a pretty specialized group of participants. And so there's this movement now to, you know, really get more representative of all the people. So we have. Results that can be applied to all people. The 10, 000 family study is happening in Minnesota, but we're also working with researchers in other places of the country as we work on this study. So when we were funded by the National Cancer Institute, they also funded a study in Michigan, a study that's being conducted at Vanderbilt University, and then also a study that's in North Carolina and Georgia. And so we're collaborating with Richard researchers from other areas of the country as well, looking at similar questions and including the wristbands and the PFAS chemicals. The 10, 000 Family Study is happening right now at the Masonic Cancer Center. It's been an honor to have both of you, Heather Nelson and Jen Poynter, with us today on the 1853 series of Minnesota Masonic Histories and Mysteries. And for more information, one more time, your website is 10 k f s. That's 10 k f like frank s like sam. umn. edu. Perfect. Log on, sign up, be a part of medical research. Let's find a cure for cancer. Thank you. Thanks for being with us today.