For the next interview in our Spotlight series, I was able to take advantage of the opportunity to speak with a few members of the Data Management Coordinating Center (DMCC) for the ME/CFS project, who work at RTI International, during a recent site visit we had here at JAX. Linda Brown, PhD, the new Principle Investigator (PI) for the project, is an epidemiologist who has many years of experience working with NIH. Becky McNeil, PhD is a research statistician, and Matt Schu, PhD specializes in bioinformatics and data integration. Keep reading to learn more about their backgrounds, how RTI became involved in ME/CFS research, and the DMCC’s plans for integrating data and driving collaboration between the three centers. 

Hi Linda, Matt, and Becky! Thank you for meeting with me and answering some questions. You all work at RTI International. To start off, can you each tell me a little bit about your scientific backgrounds?

Matt: Hey Courtney! So I’m Matt Schu, and I have my PhD in Bioinformatics from Boston University. I spent a little bit of time working in the cancer industry before beginning to work at RTI, where I’ve been for about a year now.

Linda: I’m Linda Morris Brown. I’m an epidemiologist with an MPH from the University of Michigan School of Public Health, and a DrPH from the Uniformed Services University in Bethesda MD. I spent a full career as a commissioned officer in the US Public Health Service, where I worked as an epidemiologist at the National Cancer Institute (NCI). I’ve spent the last 10 years at RTI exploring other areas of research besides cancer; I led a Data Coordinating Center for a NICHD [National Institute of Child Health and Human Development at NIH] Network on the effects of drugs in pregnant women, I’ve done some work with NIOSH [National Institute for Occupational Safety and Health at CDC] on the burden of disease from occupational exposures, and I worked with the Division of Viral Hepatitis at CDC on community-based programs for Hepatitis B screening and treatment. I’m still collaborating with my colleagues at NCI, working on an inflammatory breast cancer paper, which is based on a study in three north African countries that we had been working on since before I retired from NCI. Epidemiology research projects usually take a long time to complete!

Becky: I’m Becky McNeil, and I was born in Michigan, but I’ve spent most of my life in the Carolinas, Georgia, and north Florida. On the academic side, I got my PhD in Biostatistics, with cross-training in Epidemiology and Bioinformatics at the University of South Carolina. I then spent just shy of 3 years at the Mayo Clinic in Jacksonville, FL, doing standard biostat work with clinical research, with observational research and some treatment trial things. I then moved to the VA in Durham, where I started primarily working with Gulf War veterans research. So I got a lot of experience with Gulf War Illness, and that’s how I became interested in this field. I was there for about 7 years, and then started at RTI a little less than 2 years ago. I’ve been working on ME/CFS since then, and still partnering on the Gulf War Illness side of things too. We actually have a new treatment trials consortium starting up in about a week. And then I have another project with NICHD/NHLBI [National Heart, Lung, and Blood Institute], a cohort study, which is completely different from all the other studies I work on!

You each have very interesting backgrounds, and it sounds like you are well-suited for this project! So, how did RTI become interested in working on the NIH ME/CFS grant, and how did each of you get involved in the project?

Becky: I think RTI got involved because the organization has a long history of research network coordination. They have been doing that for 30 or 40 years, and this was an amazing opportunity in that area where we thought we could really contribute in terms of helping the network in management, organization, and leadership. I’ve heard with Gulf War Illness and with ME/CFS that there’s such a strong need for innovation computationally, and in finding new ways to bring researchers together in terms of the clinical side and in translational research that makes deep use of the data. So, we thought we have a lot of great resources in those areas that we could bring to this project.

Linda: RTI is very interested in working on data coordinating center grants with NIH. When RTI saw the announcement for the ME/CFS DMCC we thought that it was a good fit with the strengths, interests, and capabilities of our staff and our unit’s focus on coordinating center work. Becky and I helped write the grant, so here we are!

Matt: And I was brought into the project because I’m part of the Genomics, Epidemiology, and Omics Research group, or GEOR, which is newly formed at RTI. My group specializes in the integration of multi-omic datasets like the ones that are being generated in a wide variety of NIH funded research projects. So once the proposals came in for the ME/CFS network, we realized that this was one of the key issues we were dealing with. I bring my own exposure to RNA sequencing and DNA sequencing, and a little bit of metabolomics and metagenomics, to  help us to think strategically about how we’re going to integrate these diverse datasets from the different centers to gain insights into patient care.

So RTI acts as the Data Management Coordinating Center (DMCC), and is really its own Center for this project. What’s the overarching goal that you hope to accomplish at your Center, and how will you go about it?

Linda: In my opinion, the overarching goal is to make this a network. And I think it’s actually a bit of a challenge because a lot of our networks are much more clinically oriented, and they’re run by physicians who have their own clinics. These studies all have a clinical component to them, but the primary focus for the Principal Investigators at each Center is basic science research. So, I think trying to bring that flavor of working together as a network, possibly on some kind of joint project, and figuring out how to build on the strengths of each of these Centers and have everyone work together, is one of our major goals. We want to make this network bigger than the sum of its parts. Once we get the public website out there, which is going to represent this whole network, that’s going to bring a face to the network that will be very important in bringing this field forward. That’s why we’re also talking to advocacy groups and patients to find out what they’re looking for. We want the public to be able to look at this site and understand what the ME/CFS Network is doing.

Matt: I agree with Linda there. And I think that once we have established that network, that’s going to enable us to take a lot of disparate datasets and combine them in some way that makes them more powerful than they would be individually. That takes a lot of organization, forethought, and also some cleverness about how to make sharing easier. I think those are some of the challenges we’re trying to be proactive about.

Becky: And I would just build on that by saying that we want to augment the existing resources. We understand that each of the CRCs are absolutely experts in their own domains and that they have amazing resources, but there are places where we may be able to augment those! For example, when we’re thinking about ways that we can support data-sharing between the three sites, we can make that more of a reality. Or when talking about a mobile phone app for patient use, Columbia had planned to support the development of an app, with a timeline such that the app may not actually be launched and in the public domain by the end of this funding period. So that’s an area where we can augment that resource to help bring it to fruition more quickly. We hope to find those points that represent gaps that we can help to fill, and really let the network kick it forward a little faster. 

What are some of the technologies you use in your work, and what power do they have to effectively integrate the data from the CRCs, and help us understand more about ME/CFS?

Becky: Conversation! It’s the oldest technology we have and I think we have to start there.

Linda: Definitely! And we’re hoping to have a lot of conversations during the annual meeting coming up in October as well. We have a lot of panel discussions scheduled for people working in similar areas. It will be very interesting for everybody to see what others are doing so they can come up with commonalities. There are different techniques being proposed for metabolomics and RNA sequencing, so it will be good to figure out how to integrate all of that together.

Matt: Yes, and going back to Becky’s point here, in order to do it, we have to agree on the methods for collecting the data, which involves having focused discussions about method collection. But in terms of other technologies, we have at our fingertips mobile technologies and cloud-based applications that allow geographically dispersed networks like ours to access and share data easily. Our challenge though is to make sure that’s done in a very secure and safe manner, and that’s something we really excel in at RTI. We want to be fostering collaboration but also respecting privacy.

Conversation is definitely key in collaboration. Okay so switching topics a bit, what was your first impression of the ME/CFS field?

Matt: There’s a research push right now where we’re taking a disease that’s poorly understood and throwing the most state-of-the-art technology at it to understand what’s causing the disease. From a research perspective, that’s a very exciting place to be because it feels like we’re finally getting some answers!

Becky: Yeah, I think it definitely needs more of that push for research. There just hasn’t been enough to date.

Linda: I think for the patients with the disease, to have it finally be recognized, is a good start. And hopefully this will bring some more interest from younger physicians going into this field as well. We know that it’s a problem to find physicians, and we know that this field would benefit from more funding from the government. It would also make a big difference if there was a code for this disease, if there was a diagnostic test, some way to support patients with these conditions, and treatments of course! There’s just really a whole open and empty box of what needs to be done for these patients.

 Yes, we have a long way to go. Is there anything else about yourselves or the DMCC that you would like to share with the readers of the blog?

Linda: So the RTI headquarters is in North Carolina, but we’re really a global company and we have international offices and 5,000 staff worldwide. We have hundreds of projects, and if we don’t have someone with the expertise in house, we have the ability to bring in outside expertise pretty easily. In addition to our in-house expertise in epidemiology and biostatistics, RTI has a large number of staff who support health-related research activities including health communications, survey research and data and specimen collection, health informatics, and health services research. So, while health is really our largest practice area, we also have other practices in different spaces such as international development, and education and workforce development.

Becky: We also have a huge environmental group. We used to do a lot of work with EPA, before EPA became less than it previously was. For example, if we have epidemiologic cohort studies and we want to go back and link data with atmospheric pollution data historically to do re-analyses of outcomes that might be associated with air pollutants, we can do that. That expertise, and actually most of the data, is already in house, so we just have to put them together. So it’s really exciting when we get opportunities like that.

Matt: We definitely have a lot of expertise in many different areas, and I think our diverse workforce makes it possible to deliver multidisciplinary expertise where it is needed most!