An update from the ADRC’s Data Management and Statistics Core: “Data is the concrete foundation of the ADRC”

July 17, 2023

Science Updates, News

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"It’s exciting to be a part of the ADRC, and work to make the foundation as strong as it can be."

Ali Shojaie, PhD

The Alzheimer’s Disease Research Center (ADRC) is grateful to the people who participate in our studies on how memory and thinking may change over time. The process of research participation generates a large amount of data, a source of information, on brain health. The job of stewarding this precious data is so important that an entire wing of the ADRC is devoted to this work: The Data Management and Statistics (DMS) Core. This Core is co-led by Ali Shojaie, PhD and Astrid Suchy-Dicey, PhD.

The first job of the DMS Core is to ensure that information collected from our research participants is correctly entered and stored safely and securely in UW secure databases. The DMS team also prepares study data for other researchers to use to make scientific discoveries about brain health and Alzheimer’s disease.

Astrid Suchy-Dicey, PhD

As of 2023, the DMS Core is completing a long-term project to improve and streamline the process of collecting and entering all participant data into ADRC databases. The new system will allow for more direct and accurate collection of participant data, and to serve as a comprehensive record of how a participant has interacted with the ADRC, including what types of data have been collected and when. Development of this new “electronic data capture” system has been led by ADRC team members Tung Le and Robin Stillwell.

“When people hear ‘data management and statistics’, they might think of it as mysterious,” says Suchy-Dicey. “But data touches everything in our center. It’s not always pretty, but it’s important. Data is the concrete foundation of the ADRC. It’s exciting to be a part of the center, and work to make the foundation as strong as it can be."

Tung Le

Another key goal of the DMS Core is to guarantee that the research studies performed using ADRC data are high quality and yield results that advance the field of Alzheimer's research in meaningful ways. “If a researcher wants to use any aspect of ADRC data, we can help them figure out the best way to design their study to achieve their analysis goals,” says Shojaie. The DMS Core acts as a gatekeeper of participant data. The DMS team ensures that data become “de-identified,” which means that the data records are not linked to any personal information to ensure privacy.

Robin Stillwell, MHIHIM

The DMS Core is especially proud to support the ADRC Development Projects awarded to early career investigators each year. The DMS Core team helps the awardees to think about the best way to use ADRC data and the mathematical approaches needed to answer their research questions. The 2023-2024 projects include a study on how treating sleep disorders may improve brain health and other exciting projects in Alzheimer’s disease made possible by our generous community members.

Members of the UW ADRC DMS Core include: Ali Shojaie, PhD (Co-Lead), Astrid M. Suchy-Dicey, PhD (Co-Lead), Laura E. Gibbons, PhD, Tung Le, and  Ellen Wijsman, PhD (Emeritus Lead)