Current practices by Alzheimer's Disease Research Centers to remunerate research participants

INTRODUCTION: Recent guidance from the National Alzheimer's Coordinating Center (NACC) recommends remuneration for all Alzheimer's disease (AD) research participants. Given AD research recruitment challenges, we assessed the remuneration practices at Alzheimer's Disease Research Centers (ADRCs). METHODS: We surveyed 37 ADRCs about remuneration for longitudinal research participants. This included type of remuneration (i.e., compensation, reimbursement) and which study procedures are remunerated. We had a 100% response rate. RESULTS: Most ADRCs (32/37) provide some remuneration but amounts and types varied. Most ADRCs reimburse for travel or food (n = 29), compensate for some study procedures (n = 32), but most do not remunerate study partners (n = 12) or offer financial incentives (n = 8). Few (n = 6) ADRCs pay for all procedures. DISCUSSION: Two areas for potential change are compensating for annual clinical and cognitive assessments that are compulsory, and for study partners. Evaluation of the impact of remuneration on recruitment and retention is needed, including for underrepresented groups. Highlights: Recent guidance recommends remuneration for Alzheimer's disease research participants. We surveyed all Alzheimer's Disease Research Centers about their remuneration practices. Most centers provide some form of remuneration to participants but this is variable. Potential areas for change are remuneration for study partners and annual study visits. Evaluating the impact of remuneration on recruitment and retention is needed.