University of Pittsburgh and University of California, Irvine (UCI) researchers have received funding from the National Institute of Aging to advance understanding of real-world patient and family member reactions to biomarker-informed Alzheimer’s disease and related disorders diagnoses.
The grant, which is expected to total $3.5 million over up to five years, will enable researchers to better understand the experiences and potential psychological impact of receiving Alzheimer’s biomarker results. These findings will provide important information for supporting patients and their families and inform best practices in the rapidly evolving state-of-the-art diagnostic evaluation of cognitive impairment.
Alzheimer’s disease biomarkers provide important information for patients and families about the causes of cognitive symptoms and, since 2021, can be used to indicate appropriate treatments. Yet, clinicians and researchers lack critical information about the use of these powerful diagnostic tools.
While some patients may expect and even be relieved by diagnostic information, others may experience sustained distress. There are significant gaps in knowledge of the psychological and social impact of delivering Alzheimer’s biomarker information to patients and their families, and the few available data come from samples that are not representative of the general population, including people who consistently lack a history of depression and anxiety, are highly educated, were seen at academic research hospitals and were predominantly non-Hispanic white.
To address this gap, Jennifer Lingler, Ph.D., professor at Pitt’s School of Nursing, and Joshua Grill, Ph.D., professor of psychiatry and human behavior at UCI, are launching the PARADE (Patient and Family Member Reactions to Biomarker-Informed Alzheimer’s Disease and Related Dementias Diagnoses) in cooperation with the New IDEAS study and the Alzheimer’s Association’s TrialMatch® program.
PARADE will leverage data from New IDEAS, a landmark study of Alzheimer’s biomarkers in a diverse population, to enroll a representative real-world population of 500 patients with memory impairment and their family members.
“We are very excited that Drs. Lingler and Grill have received funding from the NIH to complete this work,” said Gil Rabinovici, M.D., professor of memory and aging at the University of California, San Francisco and principal investigator of New IDEAS. “We are confident that it will add an important focus on the patient and family experience and tremendous value to the New IDEAS study.”