A team of Alzheimer’s disease researchers and advocates, including a University of Florida College of Public Health and Health Professions investigator, has received a three-year, $1.56 million funding award from the Patient-Centered Outcomes Research Institute, or PCORI, to develop a national network that links patients and caregivers with scientists in order to accelerate development of new Alzheimer’s treatments.
The award supports the creation of the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network by Alzheimer’s disease experts and patient advocates at Florida, Mayo Clinic, University of California, San Francisco, and UsAgainstAlzheimer’s. The network joins 20 other patient-powered research networks in PCORI’s PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is designed to connect researchers, patient communities, clinicians and health systems to enable scientists to conduct clinical research more quickly and less expensively and to focus on the questions and outcomes that matter most to patients and those who care for them.
Using typical recruitment methods, researchers could spend months trying to find even a small number of people who qualify for participation in a particular Alzheimer’s or related dementia study, said Dr. Glenn E. Smith, a co-principal investigator and chair of the department of clinical and health psychology at Florida. A nationwide network comprising tens of thousands of patients and caregivers who are willing to participate in research could greatly improve that process.
“With a few keystrokes, a researcher could identify those people who would qualify for a study and then contact them and offer for them to participate, all the while protecting people’s privacy and their protected health information,” said Dr. Smith, the Elizabeth Faulk endowed professor. “In some ways this is a kind of matchmaking system that makes it much more efficient, and therefore less expensive, to conduct clinical trials.”
The network’s governance board, made up of patients, caregivers, advocacy group leaders and researchers, will work to ensure that the studies carried out through the network focus on research areas that are relevant to the people affected by Alzheimer’s disease and other forms of dementia, Dr. Smith said.
“We want to make sure that researchers using this network have involved patients and caregivers in the development of their questions, the design of their studies, the selection of their study outcomes and the plan to disseminate the research back to the community once the results are known,” he said.
The network also will focus on efforts to recruit patients and caregivers who are African-American or Latino. Both groups have higher rates of Alzheimer’s disease and dementia than Caucasian populations, but they are underrepresented in research studies.