The National Institute on Aging (NIA), one of the National Institutes of Health, has awarded the University of Pittsburgh and the University of California, Irvine, a multi-million dollar grant to better understand patient reactions to Alzheimer’s disease diagnoses.
The PARADE research study (Patient And family member Reactions to biomarker-informed ADRD DiagnosEs; RF1AG080591) is being led by Jennifer Lingler, PhD, CRNP of Pitt Nursing and Joshua Grill, PhD at the University of California, Irvine. The grant is expected to total $3.5 million over up to five years.
The new collaboration cooperates with the New IDEAS study (funded by the American College of Radiology) and the Alzheimer’s Association TrialMatch Program. The project will enable researchers to understand better the experiences and potential psychological impacts of receiving Alzheimer’s biomarker results. The results will give patients and their families the vital information they need to monitor and support the diagnoses.
“The use of Alzheimer’s disease biomarkers in clinical practice provides important information for patients and families about the causes of cognitive symptoms and, since 2021, can be used to indicate appropriate treatments,” according to a release on the study. “Yet, clinicians and researchers alike lack critical information about using these powerful diagnostic tools. Specifically, the psychological and social impact of delivering Alzheimer’s biomarkers to patients and their families remains less than thoroughly described. While some patients may expect and even be relieved by diagnostic information, others may experience sustained distress that warrants intervention."
Researchers have found that the available data on these experiences do not come from a diverse population, but instead came from people who lacked a history of depression and anxiety, were highly educated, were seen at academic research hospitals and were predominantly non-Hispanic White.
PARADE will enroll 500 patients with memory impairment and a family member to participate; and will work closely with the New IDEAS study, a landmark study of AD biomarker uses in clinical practice.
“We are very excited that Drs. Lingler and Grill have received funding from the NIH to complete this work,” said Gil Rabinovici, MD, University of California San Francisco, and Principal Investigator of the New IDEAS study. “We are confident it will add an important focus on the patient and family experience and tremendous value to the New IDEAS study.”