Palliative Care Research Cooperative Group (PCRC): Refinement and Expansion

$400,585U2CFY2019NRNIH

University Of Colorado Denver, Aurora CO

Investigators

Jean S Kutnercontact Kathryn I Pollak Christine S Ritchie

Linked publications & trials

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Abstract

Project Abstract Alzheimer's disease (AD) and AD-related dementias (AD/ADRD) affects more than 5 million people and their family caregivers; its prevalence is projected to double by 2030. Dementia is the sixth leading cause of death in the United States. Distressing symptoms are common, and worsen over the course of the illness, often resulting in transition to new care settings. Family caregivers experience a significant toll as they care for their loved ones for many years, suffering themselves from depression, physically illness and experiencing financial struggles. Although much research has focused on the needs of ADRD patients and their caregivers, research regarding the palliative care needs in this population is lacking. Research that links palliative care and ADRD is urgently needed to improve care and outcomes when strain is highest and symptoms are most severe. The Palliative Care Research Cooperative Group (PCRC)(U2C NR014637) is a robust interdisciplinary research community that supports investigators in the conduct of high-quality, multi-site palliative care research. Currently, little expertise exists in the PCRC to support investigators in the conduct of ADRD-focused research. The PCRC could more effectively serve the needs of the population with ADRD and ADRD investigators if its scope were broadened to include ADRD-specific topics and expertise. The overarching goal of this administrative supplement is to augment PCRC infrastructure by enhancing expertise and resources that will further ADRD palliative care research, consistent with the aims of the currently funded U2C. We will achieve this goal by: 1) expanding the PCRC De-identified Data Repository to include ADRD research; 2) enhancing existing PCRC measures and methods resources with ADRD-specific expertise; and 3) supporting investigator training focused. The activities supported by this ADRD supplement will build on the existing resources of the PCRC to enhance the quality, quantity and impact of ADRD palliative care research, addressing gaps in the evidence base and informing care for adults with ADRD and their caregivers.

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