Outcomes research is playing an increasing role in finding the  best, most effective ways to understand, diagnose and treat illness. Evanston Northwestern Healthcare Research Institute’s Center on Outcomes, Research and Education (CORE) is a leader in this area. With academic ties to several departments at Northwestern University, including the Feinberg School of Medicine’s Institute for Healthcare Studies, and collaborating in clinical research with a number of hospitals,  CORE’s research on health outcomes and effectiveness evaluates how various treatment strategies affect results important to patients, including quality of life. All CORE investigators are on the faculty of the Feinberg School’s Institute for Healthcare Studies.

Annually, CORE receives approximately $12 million for outcomes research projects. “Five years ago, that funding primarily supported projects related to cancer,” says David Cella, PhD, CORE director. “Now, we are increasingly expanding into neurology, psychiatry, and rheumatology, with a number of studies that cut across diseases, and with an increasing emphasis on chronic conditions.”

The Research Operations team at CORE

CORE is a national leader in patient-reported outcomes research. Dr. Cella is principal investigator of the statistical coordinating center for the NIH Roadmap Initiative to build a Patient-Reported Outcomes Measurement Information System (PROMIS), which  aims to revolutionize the way patient-reported outcome tools are selected and employed in clinical research and practice evaluation. PROMIS is a cooperative network that includes Evanston Northwestern Healthcare, Stanford University, University of Washington, University of Pittsburgh, University of North Carolina at Chapel Hill, Duke University, and Stony Brook University. “The goal of PROMIS is to create a common, publicly available instrument to measure patient-reported outcomes across conditions,” Dr. Cella says.  PROMIS is developing ways to measure patient-reported symptoms such as pain and fatigue, as well as aspects of health-related quality of life, across a wide variety of chronic diseases and conditions. “We are looking at developing a tool which, with a minimal number of measurements, will allow physicians to track and evaluate symptoms with greater immediacy so that any needed interventions, such as a change in medication or dosage, can be implemented expediently.”

PROMIS is one of many initiatives under way at CORE. In 2006, CORE  received  a $21 million NIH Toolbox Award, a five-year contract administered through the National Institute on Aging (NIA) to create the Toolbox for Assessment of Neurological and Behavioral Function. Dr. Richard Gershon, Director of Psychometrics and Informatics at CORE, is the principal investigator and the only investigator in the nation to receive this award. “This award allows us to broaden the scope of instruments and research conducted at CORE,” he says. “We are now developing, locating and validating measurement tools for emotional, cognitive sensory and motor functions, with an emphasis on measuring outcomes in a clinical trial,” he explains. The tool kit developed will initially be used in epidemiological and longitudinal studies across the 15 institutes of NIH. “In the long run, the tool kit should produce an easier, faster and less expensive ways for researchers to apply for and conduct research studies,” he adds. “For patients, this may mean that clinical trials are completed more quickly, bringing new treatments and drugs to the market faster.”

Dr. Cella points out that CORE, which has approximately 80 employees, of whom 15 are outcomes scientists, reflects the One Northwestern vision, which aims to take full advantage of the University’s resources, integrating talent and leadership at multiple levels to promote scientific excellence and create a whole that is stronger than the sum of its parts. “CORE reflects that commitment, which in the research arena is demonstrated through staffs dedicated to operations, scientific advancement, data management, statistics and psychometrics. We offer a variety of services not only to Evanston Northwestern Healthcare, but to Northwestern University and external investigators around the globe.”

David Cella, PhD Executive Director, CORE