Increased public and private investments in Alzheimer’s disease research have brought about a proliferation of potential therapeutic targets. Drugs and other interventions to hit those targets are moving into clinical trials. Other studies are helping us better understand risks for dementia and examining best approaches to clinical and long-term care. Yet engagement and participation has not kept pace with the acceleration of research and great need for volunteers.
The impact of low participation impedes progress toward generating study results, keeping potentially effective therapies achingly further away from people with and at risk for dementia, and their caregivers.
With the growing global epidemic of Alzheimer’s disease and other dementias, and the recent string of negative clinical trial results, the urgency to correct this situation has never been greater.
At the Alzheimer’s Association International Conference (AAIC) 2018, representatives of the National Institutes on Aging (NIA) at the National Institutes of Health (NIH) reported progress on the National Strategy for Recruitment and Participation in Alzheimer’s Disease Clinical Research, the effort convened to outline practical, proactive approaches to help study sites and researchers recruit and retain volunteers for Alzheimer’s and other dementia research studies.
To devise the strategy, the NIA, with facilitation by the Alzheimer’s Association, brought together experts and collected insights from a collaborative of government, private, academic, and industry stakeholders, as well as from individuals with Alzheimer’s and other dementias, caregivers, and study participants.
“Perhaps most fundamental is the need to understand, in a careful and sensitive way, what motivates and facilitates — or impedes — participation by individuals from diverse communities in Alzheimer’s and other dementias research,” said Marie A. Bernard, MD, geriatrician and Deputy Director of the NIA.