Researchers and patient advocates receive funding award to build Alzheimer’s research network
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 UF, 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 Glenn E. Smith, Ph.D., a co-principal investigator and chair of the department of clinical and health psychology at the UF College of Public Health and Health Professions, part of UF Health. 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 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, 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 National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network plans to collaborate with the OneFlorida Clinical Research Consortium, a statewide partnership to support patient-centered health care research that recently received a $7.9 million funding award from PCORI. The principal investigators of the PCORI funding award are Betsy A. Shenkman, Ph.D., chair of the department of health outcomes and policy in the UF College of Medicine, and William Hogan, M.D., director of biomedical informatics at the UF Clinical and Translational Science Institute.
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.
This is the second PCORI-funded project for Smith, who joined UF this fall as part of the university’s preeminence initiative. He leads an ongoing study that compares the effectiveness of several different behavioral interventions that have shown some ability to impact the course of decline in Alzheimer’s and other dementias. The interventions include cognitive exercises, memory compensation skills, physical exercise, support groups, and patient and caregiver education. Participants in the behavioral intervention study will be able to join the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network and continue to provide health status updates to Smith and his team, allowing the researchers to track outcomes long after the study has ended.
The funding award to the network has been approved by PCORI’s board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.