Bioscience research brings both scientific and economic benefits, improving lives and creating jobs. The University of Rochester Medical Center is embarking on a project that may lead to important advancements on both fronts. While testing a drug that could someday slow the progression of Alzheimer’s disease, URMC researchers are also helping create an electronic data network to enhance New York’s growing biotechnology sector.
URMC is one of several sites around the world participating in the first large-scale human trial of an experimental drug intended to help people with mild to moderate Alzheimer’s disease. The medication has shown significant promise in early stage clinical studies. Finding the right subjects to enroll in the next phases of study, however, will likely be a challenge.
“We have to define and categorize people, their conditions, their medicines, and their treatments in incredible detail,” says Anton P. Porsteinsson, M.D., who is leading the study in Rochester.
In most clinical studies, investigators sift through reams of patient records by hand. After identifying potential candidates, researchers track down additional data to complete each person’s profile. The process can be lengthy, and it does not always keep up with a subject’s health or lifestyle changes. That can expose a participant to unexpected risks and negatively affect the quality of a study.
URMC is part of a statewide collaboration working to improve the subject selection process — and the integrity of research – by using electronic medical records for research purposes. The Partnership to Advance Clinical electronic Research (PACeR) is sponsored by the Healthcare Association of New York State (HANYS) and includes leading pharmaceutical companies, prestigious clinical research organizations, patient advocates, technology firms, hospitals, physicians, and patients. PACeR has identified barriers, as well as solutions, to using electronic medical records for the creation of a robust data network. In addition, the initiative has built a networking platform for physicians to communicate with each other.
By using the PACeR project in its Alzheimer’s study, URMC is becoming one of the first research organizations to demonstrate the PACeR network’s potential value. Project organizers hope the developing network will eventually serve as a model for other states, regions, and the nation.
“Ultimately, it will become a tool that allows for seamless integration between electronic medical records and study databases,” Porsteinsson says.