By Danny Yarnall
Penn Program on Precision Medicine for the Brain (P3MB) researchers and their collaborators are calling for a revision of studies to better consider persons living with dementia in order to provide vital data for future care interventions.
Embedded Pragmatic Clinical Trials (ePCTs) try to make research look as much like actual care as possible. They are scored on their “pragmatism” or how closely they resemble standard care. If a study is designed well and its methods closely hew to what clinical care looks like in a particular care setting, it can provide highly actionable information that healthcare professionals and policymakers can use to improve care for people in that care setting.
Currently, relatively few ePCTs are being used in Alzheimer’s research. Meanwhile, a fragmented healthcare system, compounded by a lack of specialists to treat the growing number of persons with dementia, often falls short of providing high-quality care to the some five million people living with Alzheimer’s disease and related dementias in the United States and supporting their care partners. While potentially valuable, ePCTs in persons living with dementia present some ethical hurdles that need to be considered and addressed.