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For the Record: Dr. Farrar Edwards and Tricia Denman

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For the Record: Dr. Farrar Edwards and Tricia DenmanWe are joined by UW-Madison's Dr. Farrar Edwards and Tricia Denman
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For the Record: Dr. Farrar Edwards and Tricia Denman

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>>> wisc-tv now presents for the record.

>>> a jumpstart to help research to benefit all of us is next on for the record.

Thank you for joining us.

I am neil heinen.

It is billed as the largest health database ever, a databank of over a thousand health profiles.

The goals, breakthroughs and prevention of diseases like alzheimer's, cancer, diabetes, and heart disease.

Uw-madison is one of the 10 academic healthcare institutes invited to participate by the national institutes of health.

Your to tell us more about all of us is the co-prinicipal investigator for the all of us program at uw-madison, dr. dorothy farrar edwards.

And research project manager, tricia denman.

Thank you very much.

>> thank you for having us in >> this is cool.

Now i do know that it has been going on for a while and that the goal is to spread the word as widely as possible, yet, not a lot of people know about it yet.

The word we start on understanding the genesis of all of us.

>> will this really grew out of the work of the director who was in the human genome project that is already brought so many medical breakthroughs.

When he became the director of the national and institutes of health, he was frustrated by the pace of medical research, particularly, biomedical research.

It's hard to recruit people and you never have the right samples we decided to change that and out of his own director research funds, he began a project and convinced all of the institutions, the national institutes of health, that this was worthy of investment and that is where it came from so this is really seen as a sort of generator, you know, to move things along because it takes too long to go from an idea to collecting data implementing whatever benefit that we find from the work.

>> and i think that there's so many people who have that sense of frustration, decades of research that we get very excited about, the promise just seems unlimited but then the slow pace of actually seeing benefits, i think is frustrating, but where is the connection between this large database, and jumpstarting research?

>> well, they decided to support starting a large database that is called all of us, very unusual, one of the largest projects ever supported by the national institutes of health, supported by all of the institutes, and i do believe that there are 22.

For the first time ever, a strong commitment to full inclusion, so 40 percent have to come from previously underrepresented groups in biomedical research.

We think of that as individuals by race and ethnicity, african-americans and native americans, but also, people with disabilities, rural and urban communities, so this is a national effort to make sure everybody is included because health problems across, you know, communities and race and ethnic groups and some groups are at a greater risk than others, and i will give you an example.

I do alzheimer's research and i am particularly interested in alzheimer's disease and african-americans.

This is an example of how we can change things.

It took 20 years to recruit enough african-americans to do the first study of all summers disease in african-americans, and african-americans are at the 100 percent greater risk than caucasians with the different genes involved.

So if we use what we know in caucasians it would not be as effective with african-americans.

So think about a, 20 years to the first study published in 2012 which is just an example of the kind of work of an inability to get large groups of people to provide their personal information along with bile specimens which is what all of us was designed to correct.

>> now that is a good example, doctor.

It feels like such a dramatic change in strategy from the image of what we want is a one researcher in her lab, focusing on this one little test that will provide prevention and cure, as opposed to this big million participant study?

>> yes this will create a fully curated database, a data set stored in a very safe way so investigators can go to the bortles, pull data down, ask questions, putting together large groups of individuals.

Think about a million people, fully representing the population of the united states, to be able to answer questions.

This is unheard of and is an ambitious project and sometimes, we feel the weight of the ambition because we are just starting here in madison.

But we do know that wisconsin residents will respond because that is what we do here.

>> now get us started here on the nuts and bolts.

What do we need to know?

>> or just to give you an idea of how many folks we are looking for here in wisconsin, as dorothy mentioned, we have partnered in marshfield and milwaukee, and as a consortium, we are looking to enroll 100,000 participants in five years.

To give you an idea of the number of a typical clinical trial whether it is a pia initiated study, they typically enroll maybe 10 folks per site, so it of the 10 to 12 hbo's nationally, we are each tasked with re-creating about 100,000 participants, so broken down between three, that means 35,000 for us in medicine which is a steep ask.

The other unique thing is all of the consenting.

Everybody who joins has to start off by signing a consent form which basically explains what the study is about, what the ask is, ensuring that there might not be any immediate benefits to the research.

So our consenting is completed online, which would give them an overall idea of what the study consist of, and an electronic health record consent.

Health records make the samples that we are creating more robust if we can see the total picture which is sort of the basis of precision medicine so that we treat you for you as opposed to treating you like me.

So kind of the consent, three questionnaires to be done online.

Once that is complete we invite you for an in person visit where we do physical measurements including height, waste, waste and hips, calculating your bmi taking a blood and urine sample as well.

When you complete full enrollment, you get $25 cash for your participation.

>> and if at any point there is some discomfort, feeling that they cannot go on anymore, what is the >> that is no problem.

If somebody is not comfortable giving blood that we can collect saliva which is less invasive than collecting a blood sample.

But all of our team is highly trained in blood and urine collection and we actually process the samples here and then we send and ship them up to the mayo clinic in rochester were all of the samples are currently being kept.

>> and if a participant needs to withdraw >> no problem.

You can withdraw at any point if you are enrolled or participant number one.

Well i might be number two.

Tricia was number one.

We argue.

Decided today that i just did not want to do it anymore, i would just need to let them know.

The data that was collected to date stays in the database but i would not be contacted in the future so people can withdraw at any time but we want to make sure people understand what we are asking.

The consent process and the explanation of the study is very thorough and we don't rush anyone.

We are happy to talk for as long as we need 2 to show people what we are asking to make sure that they are comfortable.

>> when we come back we will talk about what this looks like over time for the individual participant and tell people >> is more than water, it is life, flowing through americans veins.

We ask a million individuals to come forward and stand for this moment in history.

All of us is different and health is very different.

We need answers for generations to come.

>> a little bit of an audio issue there but that is one of the spots that is promoting all of us which is an effort about one year in now and uw-madison is one of the locations participating to create the world's largest health database with over 100,000 people here in wisconsin and a million dorothy farrar edwards who is the coprincipal investigator for all of us and research project manager tricia denman.

They are talking about all of the different groups you're trying to reach, and i am suddenly thinking that it feels almost endless, especially in wisconsin when you have health concerns are particular to rural areas as opposed to urban purity of northern and sutherland and maybe even environmental issues about where they live in their access to water.

Is all of this a part of the >> it is, isn't it amazing?

>> yes.

>> part of the reason we ask for a urine specimen is to look at environmental exposures which could be particularly important for people in rural areas where firms use fertilizer and there is a concern of exposure.

So the all of us research protocol was designed to provide the data for those questions by knowing where somebody lives.

We can tell a lot about their environmental exposure and their social and economic resources, so this project was to gather social determinants of health, environmental determinants of health, all sorts of things that we have previously not had the ability to study because we did not have enough people and enough data to answer the big questions.

>> now i know there's a lot of questions for this.

[laughter] >> but the more i think about it, doesn't it seem like why haven't we done this before?

>> absolutely.

>> i think that's a great question.

I don't think that the technology was available first of all, to manage the data.

When you think about what can be done with huge data set, the amount of data collected for a million people, this is where data science and artificial intelligence and data mining techniques will be really valuable to see the patterns that we can't see, one investigator looking at a data set.

The other thing is the technology to do the genetic and genomic analysis of the specimens was not really readily available and it was very expensive and the cost has dropped to now in part because more people are doing it.

So, it just felt like the right time to launch a project of the magnitude because the technology and commitment was there and so was the funding.

>> now tricia, let's talk a little more about the commitment of the individual participants and what they might expect.

How regularly will they be doing something connected to all of us?

>> well, that is a great question.

Obviously retention is important because we plan on looking at folks over 18 year span, so there will be multiple opportunities for them to reengage or stay engaged with all of us.

There might be more questionnaires to answer and there may be more opportunities to find out about the different kinds of studies that they might be interested in participating in.

The other cool thing that i love about the program is all of the data that we collect is returned to them so they will get all of the lab results that we run on their blood.

They will get a return of information on the genome sequencing and typing and return of information on the electronic health record.

So that really empowers people to have this information, and take it to their physician if they so choose.

Understand what environmental exposures they might have in their home and might not have known about before so they can take action on that but certainly, over 10 years there will be multiple ways for participants to engage in we currently have the ability for them to sink a fitbit to the portal so we can get the movement data from them which is really kind of a hot trend right now, especially in preventative medicine.

We want to see how active people are and how that relates to their health, so that is another cool thing that participants can do right now.

>> now it does seem that some of the most valuable information might come from the people who are the least interested in participating?

>> yes.

>> just because they don't want to engage with the healthcare profession?

>> yes.

>> they may be have fears that they don't want to deal with.

Engage with them, if you can?

>> we try to engage by being out very much in the community just not hanging out in the hospital or healthcare settings but with the community, we have been working with the ymca, the national library of medicine providing support to public libraries nationally, and we are working with the urban league, with campus multicultural center and a lotta partners.

We have a full team on the ground.

Uw has a school of public health with a research center in milwaukee that is really designed to support engagement with the milwaukee community.

So all of us in uw includes a team in milwaukee so we are where people are not just waiting for them to come to us, so we do talk a lot and we do programs like this.

It's very helpful because we want to demystify the research process.

>> and we will not embarrass you about your fondness for french fries.

>> right.

>> we will talk about.

>> yes, 700 thousand people have a fondness for french fries.

[laughter] >> when you are one of a million, your own piece is important but it also dwarfs in the perspective of it all.

>> and i like the idea making records available to participants but the big concern is privacy?

>> absolutely.

>> in fear of the information getting into the wrong hands, how are you protecting that?

>> so all of the information that we gather is de-identified immediately so when you enter the program you enter is a number as opposed to any identifiable information.

>> okay.

>> the other important doctor edwards can this more but we keep all of the data separate.

So certainly, no one can say that we are 100 percent guarantee that we cannot be world, not today.

>> we bring that transparency ford because it is a real thing.

We are not trying to pretend that it is not but we do keep the information in separate clouds.

So i mentioned, the blood in urine stays with mayo with a separate identifier that cannot be linked to the other data.

The questionnaire data, kept on a separate club.

The electronic medical records are on a separate cloud, separate from that of the key.

So if somebody was going to try to approach to get the data, it would be extremely difficult for them to collected altogether and then re-identify the data.

All of us hires hackers to try to hack the system.

>> smart.

>> they have not been able to do it, but that continually keeps the privacy issue kind of on the forefront to make sure on a daily, weekly basis, they are doing all that they can.

>> before we get your perspective, let's take one last commercial break.

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>>> dr. dorothy farrar edwards and tricia denman and i are talking about all of us, a massive effort to find out the health of all of us.

>> and i just wanted to add one more point.

The all of us data stored in the cloud is detected the same system that the national security agency uses, so it is carefully protected.

The other thing that people might be worried about, the recent criminal cases that were solved because the dna, the all of us program is protected, totally protected, from the release of information in any way, shape, or form outside of the research structure that is created where the research is identified.

So the law enforcement organization cannot subpoena information from the all of us program.

It is not allowed it is written into the protocol, so the data is as safe as it can possibly be.

The system is constantly upgrading the protections to make sure that all of this precious information is just as safe as possible.

>> so, how can people participate?

>> i will let tricia answer that.

>> as i mentioned before, anyone 18 and older can participate as long as you are not currently incarcerated in half the ability to consent, which anyone who would likely come forth to us would have that ability, just to make sure that they understand with the consent form is telling them before they agreed to participate in the study.

So as i mentioned, it is all pretty much done online.

>> go to the website?

>> yes, sign up.

There is a joint now button that will walk you through the process and the portal has the ability to schedule an appointment to come in.

We are multiple different locations throughout madison and other spaces where they can come to do enrollment.

So if you're already seeing your physician at the uw west clinic, stop on by.

The in person enrollment just takes 20 to 30 minutes.

>> are most healthcare providers engaged in this?

>> so obviously, the grant and funding for itself sits within uw.

Collaborating efforts with meritor as well, access healthcare.

So we are strategically placed all over so it is easy to find a place to get your samples collected.

>> now doctor, just to the potential for this.

>> yes.

>> just using alzheimer's research is an example.

>> will we still don't know what causes this.

I will give you a more personal example.

My brother died at 43 of a heart attack.

Both of my parents have had serious heart disease and surgery.

I was diagnosed with idiopathic hypertension which means i had hypertension but nobody knew why when i was 21, okay?

I have been taking blood pressure medicine since i was 21.

My poor children are at an incredible risk for cardiovascular and heart disease, and i want to know family that i lost my brother at such a young age?

I think many of us have questions about our own health, our family health, this is the best way to answer because we needed lotta people with a lot of data who are willing to work on this together.

>> and as participant number two, you are providing the information that would help researchers answer the questions?

>> no i don't participate in every research project that comes round but i signed up for this one not because i am the copi, but i have a serious health issue and i want to make sure that my granddaughters don't have the same problems that i have seen.

You know, losing a brother is terrible at such a young age so we all come with health questions that could be resolved by participation.

It is a very small gift for a potential gain.

Now i know that many people are uncomfortable with the research process but we make it as easy and as friendly as possible.

We value our participants and do our best to make sure it is a pleasant experience we hope that with a pleasant and positive experience, maybe others will do it as well.

>> now i know that there is no end date for this, right?

But when is the next milestone when we might see some results?

>> well i think the next big milestone will be sometime in 2019, the clean data tests will become available for information which will be publicly available under constrained conditions but a community researcher has just as much access as an investigator who is nih funded like i do.

So it will become a public resource which will start in the year and early next year we come back and do it again?

>> that would be great.

>> thank you for your help with this.

His fascinating.

>> thank you.

>> we will come back and wrap up for the record, right after this.

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>>> my thanks to dr. dorothy farrar edwards and tricia denman and you for joining us.

We will see you next week on for the record.

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Real-time closed captioning provided by u.s. captioning company




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