The NIA IMPACT Collaboratory Patient and Caregiver Relevant Outcomes (PCRO) Core has created the IMPACT PCRO iLibrary to help investigators seeking to develop pragmatic clinical trials in people living with Alzheimer’s disease and related dementias (AD/ADRD).

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 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.”

Dr. Hanson led the effort to create the library supported by Project Manager Kathryn Wessell, MPH. They began by organizing information about potential outcome measures in existing data sources. PCRO Core Executive Committee Members, Joan Teno, MD, MS and Debra Saliba, MD, MPH, shared their expertise working with the Minimum Data Set for Nursing Homes (MDS), Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, and claims data to create the initial version of the library.  Spencer Hey, PhD, of the IMPACT Ethics and Regulation Core, used AirTable to create the library and developed an instructional video on how to use the resource. Other members of the PCRO Core who contributed to the library include:

• Antonia Bennet, PhD
• Amy Kelley, MD, MSHS
• Joshua Niznik, PharmD, PhD
• Christine Ritchie, MD, MSPH
• Sheryl Zimmerman, PhD

“The PCRO iLibrary will grow and expand with the broader IMPACT Collaboratory, as more ADRD investigators conduct ePCTs, and share what works to capture relevant outcomes,” said Dr. Hanson. “Within the next year, the PCRO iLibrary will expand to include selected patient or caregiver-reported outcomes rated for their pragmatic properties.”

Phase 2 of the PCRO iLibrary will also include collaboration with David Meyers, PHD, MPH, of the IMPACT Technical Data Core, to continue to expand the library.

To learn more about the PCRO iLibrary and use this resource, visit https://impactcollaboratory.org/pcro-library/.

Sheryl Zimmerman, PhD, a member of the executive committee for the IMPACT Patient and Caregiver Relevant Outcomes Core, was recently quoted in a New York Times opinion piece about the impact of isolation on nursing home residents during the COVID-19 pandemic.

“We’ve lost part of the long-term care work force by restricting families,” said Zimmerman,  who is also co-director of the Program on Aging, Disability and Long-Term Care at the University of North Carolina at Chapel Hill and the School of Social Work. “Sure, the risk of spreading COVID-19 (or any other infectious disease) is less when visitors are restricted, but the consequence of social detachment may be greater, and this is a serious risk: we’ve known for more than 40 years that isolation increases death.”

Read the full piece at this link.