Patient and Caregiver Relevant Outcomes iLibrary helps design pragmatic clinical trials
Patient and Caregiver Relevant Outcomes iLibrary now available to help design pragmatic clinical trials
Laura Hanson, MD, MPH, supported by project manager Kathryn Wessell, MPH and PCRO Core member Sheryl Zimmerman, PhD, created a library to help investigators seeking to develop pragmatic clinical trials in people living with Alzheimer’s disease and related dementias. This library is part of the NIA IMPACT Collaboratory
What is the IMPACT PRCO iLibrary?
The IMPACT PCRO iLibrary is an online, searchable and interactive resource containing information on selected outcome measures derived from existing data sources for pragmatic trials enrolling people with AD/ADRD. The members of the PCRO core selected the outcome measures based on their relevance to the lived experience of people with AD/ADRD and their care partners. In addition, the selected outcomes have pragmatic characteristics that make them good candidates for use in embedded pragmatic clinical trials (ePCTs). Pragmatic outcome measures allow for efficient and uniform data capture across multiple sites and large diverse populations while minimizing the burden on people living with dementia or their care partners.
“The IMPACT PCRO iLibrary is a unique resource for investigators who lead pragmatic trials to improve outcomes for people living with dementia and their care partners,” Laura Hanson, MD, MPH, PCRO Core Leader.
“When designing a clinical trial, the first question is often, ‘What outcome are we trying to improve?” said Dr. Hanson. “When we began the work of the PCRO Core, we quickly recognized that it’s easy to find outcome measures, but really challenging to learn if these outcomes fit the needs of a pragmatic trial.”