Journal
ALZHEIMERS & DEMENTIA
Volume 14, Issue 8, Pages 1063-1076Publisher
WILEY
DOI: 10.1016/j.jalz.2018.02.021
Keywords
Internet registry; Clinical trial recruitment; Online neuropsychological tests; Alzheimer's disease; Neuroscience clinical research studies
Categories
Funding
- California Department of Public Health [16-10054]
- Alzheimer's Association [BHR-16-459161]
- Global Alzheimer's Platform Foundation
- Alzheimer's Drug Discovery Foundation [20150802]
- Larry L. Hillblom Foundation [2015-A-011-NET]
- Monell Chemical Senses
- Patient Centered Outcomes Research Institute [PPRN-1501-26817]
- VU University Medical Center
- Janssen Pharmaceutica
- Biogen, Inc. [174552]
- Ray and Dagmar Dolby Family Fund
- Rosenberg Alzheimer's Project
- Drew Foundation
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Introduction: Recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies and clinical trials limit the development of new treatments. Widespread Internet use allows data capture from participants in an unsupervised setting. The Brain Health Registry, a website and online registry, collects data from participants and their study partners. Methods: The Brain Health Registry obtains self and study partner report questionnaires and neuropsychological data, including the Cogstate Brief Battery, Lumos Labs Neurocognitive Performance Test, and MemTrax Memory Test. Participants provide informed consent before participation. Results: Baseline and longitudinal data were obtained from nearly 57,000 and 28,000 participants, respectively. Over 18,800 participants were referred to, and nearly 1800 were enrolled in, clinical Alzheimer's disease and aging studies, including five observational studies and seven intervention trials. Discussion: Online assessments of participants and study partners provide useful information at relatively low cost for neuroscience studies and clinical trials and may ultimately be used in routine clinical practice. (C) 2018 the Alzheimer's Association. Published by Elsevier Inc. All rights reserved.
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