Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
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Displaying 21 - 30 of 42 resources.
- The NIH Strategic Plan for Tribal Health Research FY 2019–2023 is designed to improve NIH's relationship and collaborative efforts with American Indian/Alaska Native communities by enhancing communication and collaboration, building research capacity, expanding research, and enhancing cultural competency and community engagement.
- This 58-page document provides guidance for engaging stakeholders in reviewing and providing feedback on research questions before a project is implemented.
- This study modeled Alzheimer’s disease prevention clinical trials in order to assist investigators in making trial design choices. The authors used data from the National Alzheimer's Coordinating Center Uniform Data Set to model trial sample sizes, the numbers needed to enroll to account for dropout, and the numbers needed to screen to successfully complete enrollment. Researchers then examined how enrichment strategies affected each component of the model. For example, enriching for subjective...
- In this review, researchers summarize some of the available methods to improve Alzheimer’s disease research recruitment, the available literature to support or refute these strategies, and experiences at the Alzheimer’s Disease Research Centers. This article also addresses the application of community-based participatory research principles and the use of participant registries to enhance research enrollment and increase diversity of research samples. Grill JD, Galvin JE. Facilitating Alzheimer...
- This five-page document presents a standardized retention plan for prevention, symptomatic, and observational trials conducted at the Center for Alzheimer Research and Treatment (CART), Brigham and Women’s Hospital and Harvard Medical School. The plan describes strategy and tactics designed to keep patients enrolled in clinical trials, and from discontinuing their participation or dropping out. It covers pre-initiation, study start-up, and study initiation phases. For a copy of the retention...
- The Wisconsin Registry for Alzheimer's Prevention is a longitudinal observational cohort study enriched with people with a parental history of probable Alzheimer's dementia. Since late 2001, this registry has enrolled 1,561 people at a mean age of 54 years. Participants return for a second visit 4 years after baseline, then every 2 years. Eighty-one percent of participants remain active in the study after 9 years of follow-up. Assessments of cognition, self-reported medical and lifestyle...
- Identifying healthy individuals with amyloid pathology is an important challenge for Alzheimer's prevention clinical trials. This paper reported on noninvasive, cost-efficient techniques to detect preclinical Alzheimer's to meet this need. Researchers applied machine learning to structural MRI of 96 cognitively normal subjects to identify amyloid-positive ones. Used for subject classification in a simulated clinical trial setting, the proposed method saved 60 percent on unneeded CSF/PET tests...
- This study evaluated the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a trial testing a nonpharmacologic approach to enhancing quality of life of individuals with dementia and their caregivers. A total of 237 dyads enrolled. The total cost of recruitment was $154 per dyad, with direct mail found to be the most effective and least costly method, at $63 per dyad. That compared...
- The goals of the Arizona Alzheimer's Registry were to increase awareness of Alzheimer's disease research among adults age 18 and older and to accelerate enrollment into clinical studies sponsored by the Arizona Alzheimer's Consortium. Participation was by open invitation. Earned media was the most effective recruitment strategy. More than 1,000 people consented and underwent an initial cognitive screening. The Registry created an infrastructure and process to screen and refer a high volume of...
- TabCAT is a software platform developed at the University of California, San Francisco that provides tablet-based neuropsychological tests translated into 10 languages. Tools available include cognitive tests of executive function, memory, visuospatial skills, and socioemotional functions, as well as symptom questionnaires.