The Future of Sharing and Accessing Alzheimer’s Disease Data

Headshot of Sarah Biber, PhD
Sarah Biber, PhD

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 2

Dr. Sarah Biber, the program director for NACC, joins the podcast to discuss building a one-stop shop for Alzheimer’s Disease Research Center (ADRC) data and what it means for the future of collaborative Alzheimer’s disease research.

Guest: Sarah Biber, PhD, program director, National Alzheimer’s Coordinating Center

Show Notes

Learn more about Dr. Biber’s talk at NACC’s Spring 2022 Alzheimer’s Disease Research Center Meeting by reading her presentation slides on NACC’s website.

Learn more about the National Alzheimer’s Coordinating Center at their website.

Register for NACC’s Fall 2022 ADRC Meeting on their website. Registration is free and open to the public. The fall meeting, which will focus on diversity, equity, and inclusion in Alzheimer’s research, will take place Thursday, October 20th to Friday, October 21st both virtually and in-person in Chicago, IL.

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. The National Alzheimer’s Coordinating Center, or NACC, has been connecting over 42 NIA-funded Alzheimer’s disease research and exploratory centers across the country since it was founded in 1999. As part of this effort, NACC organizes a biannual meeting for the centers to present their research, share their findings, and coordinate strategies for advancing Alzheimer’s disease research. In part two of our series exploring the national strategy for Alzheimer’s disease data and research, I’m joined by Dr. Sarah Biber, program director for NACC. Dr. Biber joined me live at the Spring 2022 Alzheimer’s Disease Research Center Meeting to discuss these biannual conferences, NACC’s work with the ADRC program, and NACC’s role in centralizing Alzheimer’s disease data. Welcome to Dementia Matters, Dr. Sarah Biber.

(Music Interlude)

Dr. Nathaniel Chin: Welcome to Dementia Matters.

Dr. Sarah Biber: Thank you. It’s nice to be here with you.

Chin: Sarah, you’re relatively new to NACC, and yet you and your team, really, are the ones that organized this hybrid-model of people from all over the country – in-person and remotely. How did that go?

Biber: Yeah. Organizing hybrid meetings is extra work, for sure, but I think it’s a model we may stick with – we’ll see what the feedback says. I like the hybrid model because it enables a lot more people, actually, to participate, right? It increases access to the meeting for folks who maybe couldn’t travel for whatever reason. So I like that about it. It is a lot of work to plan this meeting, yeah. I mean, we have a fantastic operations team at NACC that has been working on this for the past several months, getting ready for this. It’s not something we plan on our own. We work closely with the different cores. They are the ones who decide on the speakers, lineups for the different sessions and stuff that are happening. Yeah, it’s an enormous amount of work. We interviewed twelve different virtual platform companies before we decided to go with the group that we went with. We had to build out that whole virtual platform that we hope worked well, but we’ll see. We’re really interested in iterating on this hybrid model and seeing how we can make it as streamlined and viable for people as possible.

Chin: While this is your first ADC meeting, this has been going on for some time.

Biber: That’s what I hear, yeah. (laughs)

Chin: What is your understanding of these? Because there’s a spring meeting, there’s a fall meeting. For our listeners who aren’t familiar, all the centers come together to really share and learn from each other, and it happens twice a year.

Biber: That’s right.

Chin: This spring one, what has the theme of this meeting been?

Biber: The theme of this meeting has really been introducing some new ideas. I’m really excited about this digital biomarker session that we’re going to be holding shortly. That is a really big, new, exciting thing. You’re going to hear from one of my colleagues at NACC – Dr. Sean Mooney – about what NACC is trying to put together to be able to build out a pipeline to start to capture that kind of data at NACC and integrate it with these other data streams, make it available through our data-frontdoor, etc. So I think there’s a lot of really exciting, new ideas like that that are being shared here at the meeting in new ways. I think this concept of where NACC is headed is a new thing that, of course, I’m excited about, in that we are really stepping up our game to be able to do a whole bunch of additional coordination across the ADRC program, to provide support for initiatives in totally new ways that we haven’t done before. So, I think it’s an exciting time, for sure.

Chin: While you are new to NACC, you do have a specialty in being able to operationalize complex centers, or certainly complex systems like an ADRC network.

Biber: Yeah. I mean, my background is – as a PhD scientist, I was trained in molecular and cellular biology, which is a viable background to have, actually, coming into this. I spent my career to date really leading operations for various types of complex centers, programs. I’ve worked in the start-up community. I try to bring a little bit of that entrepreneurial energy to the ADRC program, as well, and the work I do at NACC. I was previously the assistant director for the National Data to Health Center. Similar thing, we were trying to coordinate across about 60 different translational research centers. I think I’ve taken some of my learnings from those things and tried to bring them here.

Chin: Based on your presentation at this ADC spring conference, you spoke a lot about NACC’s role in all of the research enterprise. I’m hoping you can share, for our audience, some of the basics. If you could start by telling us, what exactly is NACC?

Biber: Yeah. So NACC has been around since 1999, so for quite a while. It’s gone through quite the evolution since then. Essentially, NACC houses data from more than 45,000 participants from across the ADRC program. We have an enormous amount of neuropathological data from 58% of deceased participants. We have amazing longitudinal data – the median is 3. We have up to 12 visits recorded for various participants, so it’s an amazing longitudinal data set. We have traditionally collected clinical data, as well as neuropathological data, as well as some legacy MRI and PET data. That data really has been used by the community. There’s more than 900 papers to date that have been published using NACC data. Essentially, what we do is we collect this data from the community and we work to try to make it usable and impactful for research.

Chin: So a lot of our listeners know about the Alzheimer’s Disease Research Centers.

Biber: Yes.

Chin: And they collect data too. Can you explain for us how are they similar? How are they different? How does NACC interact with the ADRCs?

Biber: Yeah, absolutely. We have standardized data, so all the data we collect is for this uniform data set. Then, we are really working over the next five years – the course of this current award cycle – to bring in all sorts of additional data streams. We’re going to be at NACC collecting digital biomarker data. You’re going to hear all about that from Rhoda Au, and Allan Levey I’m sure too. In addition to that, digital neuropathologic data, as well as we’re going to bring in standardized MRI and PET data through the SCAN initiative. That’s a lot more data that we’re going to be bringing in, all connected to NACC IDs, and hopefully making searchable through our data front door interface we’re going to be building.

Chin: And you said two things I really wanted to ask about after your presentation. One, the NACC ID, and then two would be this digital front door.

Biber: Yeah. 

Chin: So let’s start with the NACC ID. Who has a NACC ID, and why is that important?

Biber: Yeah, it’s the unique identifier for participants from across the ADRC program. So people might have a participant ID at their individual center, but every single participant that’s a part of the ADRC program and a part of the UDS study has a unique NACC ID within our system. That’s what we’re going to use to be able to connect all the different data streams for that participant together within our system. So there might be some metadata coming in from NCRAD or NIAGADS, right? We would then connect that data to the NACC ID for the participants in our study.

Chin: So it is a way to best characterize a single person, but anonymously?

Biber: Anonymously, correct.

Chin: That’s my next question related to the NACC ID. What about privacy? Do you have concerns, or how does NACC protect participant privacy?

Biber: Well, that’s a question for Sean. I mean, we have data use agreements. Everything is HIPAA compliant. You know, we are going to be moving a lot of this data into the cloud and to HIPAA-secure environments there. So yes, we’re following best practices but Sean can tell you more details about that.

Chin: Ok so I will be interviewing Sean next.

Biber: (laughs)

Chin: So, why is data harmonization – which you spoke a lot about at this conference – why is it so important in AD research?

Biber: Well, I think we really want to be able to expand access to data, right? I mean, thinking about imaging data, having access to all of this standardized data – large quantities of it – is going to enable us to ask all sorts of new questions, right, especially when that data gets its own algorithms to be able to pull out patterns, etc cetera. And especially when all of that data is then also connected to biospecimen data, to genetic data, to clinical data. If we have that all connected and standardized in a way that we have like standard metadata for, we can then – be able to combine much larger quantities of data together to be able to say more with the studies that are being done. 

Chin: And what do you mean by meta-data?

Biber: Oh, it’s how we characterize the data. How we make it searchable, how it’s described in our system. It enables us to be able to search it effectively and we want to have a standard way that we describe different kinds of data so that we can – large quantities of data can easily be searched, so people can find what they need and what’s out there for their studies.

Chin: You call it a ‘one-stop shop’.

Biber: One-stop shop, yes.

Chin: And so, what is this one-stop shop and why is this beneficial for AD research?

Biber: Yeah. I mean, right now it’s a concept. We are actively going to be – we’re engaged right now in doing requirements. We don’t want to build it and hope that people come, right? We want to develop an interface – a search-and-access interface – that’s going to be maximally impactful for the research community. And so as part of that, we want to be able to have as many different data streams searchable for ADRC participants through that data front door. The thing that excites me the most about it is I think it’s going to really open the door to be able to ask new questions in Alzheimer’s research and be able to have the data to answer those questions. If we do this right, researchers are going to be able to come to this data front door and say, “Hey, okay, I want to look at all the patients with this specific genetic mutation. That have – for whom there’s PET imaging data available for, and who we can also – who got this score on such-and-such clinical study. I want to pull all that data and I want to look for meaning right there or ask my question with that data”. So I think that’s what’s really exciting to me about it, because I think it’s really connecting those different data streams – those large pools of data together for participants – is really going to open the door to new kinds of science.

Chin: I mean, in essence, you’re taking tons of data, different types of data from all over the place, putting it together, and then making it easier for scientists to ask questions and investigate.

Biber: Yeah – and access the data, right? We want to make it easier for folks to search and access the data, but I can’t emphasize enough, we are looking for input from the community on this. We are starting with requirements analysis. We’ve launched a pilot with NCRAD and NIGADS. We’re going to be holding these focus groups with folks from across the ADRC community to better understand at what level do we want to be able to search things. How should the metadata be structured for different kinds of data, right? Do you want to be able to access everything in one place? Are you okay with visiting multiple sites to get what you need? Also we want to build the Rolls-Royce version of this, but we also want to know what can we build quickly that’s going to have an impact. What’s the MVP for this look like? Those are the sorts of things that we’re thinking about and we haven’t built anything yet because we need to do this outreach to the community. We need to understand what’s already out there in the ecosystem. We don’t want to duplicate things that already exist, right, so we build something that’s really maximally viable for researchers in this field.

Chin: Well what have you found to be one of the most interesting or surprising things that have happened at this spring ADC?

Biber: I was kind of expecting there to be an ice cream bar, like I was expecting there to be a sundae bar. Everyone talked about how the ADRC folks are really into ice cream, so when we – I thought we were going to have a place you could pick out your toppings, do all the scoops and all the things, but anyway that didn’t happen. But you can get an ice cream on a stick.

Chin: We’ll put that in for the feedback, then.

Biber: (laughs) Put that on the feedback. (laughs) What’s the most surprising thing…

Chin: Or something you take away from this meeting?

Biber: Well, I just think this is a really friendly community. And I’ve gotten some appreciation for that, meeting people on Zoom, but I’m very new to the ADRC community. I’ve been at NACC for barely six months, right? So for me, coming in and being here, everyone is so friendly. Everyone is so welcoming. It feels very collaborative. I really appreciate that, and it makes me excited to collaborate under each of these initiatives more with folks. It makes me feel optimistic that we’ll be able to get the input we need to be able to build things that are going to be valuable for the program as a whole.

Chin: Well, with that thank you, Sarah, for being on Dementia Matters.

Biber: Thank you. Good to be here.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at, and follow us on Facebook and Twitter. If you have any questions or comments, email us at Thanks for listening.