The National Institute on Aging has launched a $27.2 million initiative to create a unified network aimed at accelerating Alzheimer’s and dementia research.
The five-year project — titled “Using Real-World Data to Derive Common Data Elements for Alzheimer’s Disease and AD-Related Dementias Research Through Ontological Innovation” — will focus on integrating and standardizing disparate real-world data sources to support Alzheimer's research. It is led by UTHealth Houston and includes researchers from Penn and eight other institutions.
Yong Chen, professor at the Perelman School of Medicine and a principal investigator on the project, emphasized that it will accelerate research and improve treatment to Penn LDI.
“This collaborative infrastructure will make research faster, more transparent, and more reproducible, leading to stronger evidence and new discoveries,” Chen said. “Ultimately, this work focuses on speeding up the development of life-changing strategies for detecting, managing, and treating Alzheimer’s and related dementias.”
In a news release, GQ Zhang, vice president and chief data scientist at UTHealth Houston and a principal investigator of the grant, said that the project aims to create better outcomes for the more than 7 million Americans who are 65 and older and impacted by the disease.
“Alzheimer’s disease is a debilitating neurodegenerative disorder that impacts the patients, their family members, caregivers, and society at large,” Zhang said. “We hope this initiative can help accelerate progress in aging research, and with data-driven discovery we hope we can do it faster, cheaper, and more effectively.”
Real-world data — which includes electronic health records, insurance claims, mobile application, and wearable device data — holds tremendous potential for understanding how dementia develops and how treatments work in everyday settings. The Alzheimer’s Association describes real-world data as “integral to the discovery, evaluation and evolution of novel avenues” in treating Alzheimer’s and related dementias.
“This project is significant because it creates an ecosystem approach to addressing data harmonization and reproducibility challenges in maximizing the value of [real-world data] through partnership among [research centers],” ReCARDO’s abstract reads.
RELATED:
Three Penn Medicine, CHOP researchers elected to National Academy of Medicine
Medical School graduate, immunologist to receive John Scott Award by American Philosophical Society
According to Chen, much of the data currently resides in scattered systems using inconsistent definitions and formats, which limits the ability to combine and compare across studies and institutions.
ReCARDO is designed to remedy this by developing common data elements — shared definitions and data standards that make heterogeneous sources compatible. In parallel, the project will build a collaborative data ecosystem, leveraging advanced tools in artificial intelligence, machine learning, and natural language processing, so that researchers across the country can securely access, analyze, and reuse harmonized data from multiple sources.
At Penn, Chen’s team will help identify key research questions, test the feasibility and reproducibility of analyses, and support the development of the CDEs.
