Carolina Data Warehouse for Health Assists Dementia Research

The Patient-Centered Outcomes Research Institute (PCORI) has released its first primary research funding announcements to support comparative clinical effectiveness research (CER) that will give patients and those who care for them the ability to make better-informed health care decisions.

A new database enabling research in Alzheimer’s and related dementias is almost complete, as a result of a unique effort by the Carolina Data Warehouse for Health (CDW-H). The project is a collaboration between UNC and Carolinas Health System in Charlotte. It involves extracting data from the respective organizations, including electronic medical records as well as chart review, to analyze physician coding practices across the two health systems and different types of clinics and specialties.

“One use of the database is just to document the extent to which our two health systems care for people with Alzheimer's disease and related dementias,” said Phil Sloane, M.D., M.P.H., Goodwin Distinguished Professor of Family Medicine at UNC, co-director of the Carolina Alzheimer’s Network and a co-principal investigator of the project. “In addition, we will be evaluating the extent to which recent guidelines for quality of care are followed, which will help us design systems to promote improved quality of care. Additionally, the database will provide a means by which drug trials and other studies can identify potential participants.”

NIH Director Francis Collins last week announced a new “national strategy” to address Alzheimer’s and related dementias, including additional research funding and resources devoted to efforts to more quickly diagnose and more effectively treat sufferers of these conditions that cause memory loss and cognitive impairment. An estimated 5.4 million people nationwide suffer from Alzheimer’s alone. The number of North Carolinians with Alzheimer’s has increased 31% since 2000, according to the Alzheimer’s Association. As the population of Baby Boomers ages, the number of dementia cases is expected to increase exponentially in coming decades.

One barrier to research efforts is obtaining accurate data sets and identifying potential clinical trial participants, in part, because of inconsistencies in the way physicians diagnose and code these diagnoses in medical records.

“There are no specific diagnostic tests for dementia and treatment effects are difficult to measure, so we expect to see a lot of variability in how patients are evaluated and managed,” added Daniel Kaufer, M.D., associate professor, Neurology at UNC; director, UNC Memory Disorders Program; co-director, Carolina Alzheimer's Network; and co-principal investigator on the project. “Ultimately, we would like to able to use the database to identify how to make the whole process of screening, diagnosing and managing patients with dementia more efficient and effective. In order for this to occur, we need to have a common set of diagnostic criteria employed across different clinical venues to compare ‘apples to apples.’"

“A database like this will enhance the ability of UNC and Carolinas HealthCare to compete successfully for clinical research funding, and to be involved more actively in clinical trials,” said Sloane. “New treatment development is one of the main goals of the National Alzheimer's Plan, and we look forward to UNC's being involved in a major way in these activities.”

Emily Pfaff, a research analyst with CDW-H who did the bulk of the analytics work, said the project is aligning data from the two health systems and converting it from its raw form into an “English-language, easy-to-read informational fact sheet” called the Cohort Description Packet.

“To be a major contributor to the needed growth in clinical and behavioral research in Alzheimer's disease and related dementias, one must be able to generate a list of patients who have the disease,” said Sloane. “In addition, one should be able to identify enough about those patients to know whether they will meet the inclusion criteria for this or that research protocol. The TraCS dementia data base will do this.”

The CDW-H is a joint service of the North Carolina Translational and Clinical Sciences (NC TraCS) Institute and UNC Health Care. NC TraCS is home of UNC’s Clinical and Translational Science Awards (CTSA) from the National Institutes of Health. The CDW-H houses data collected from patient encounters with UNC Hospitals and through its billing system for use by researchers at UNC and provides technical support for studies involving the data.

The project is supported by a pilot grant from UNC’s CTSA program.