4.7 Article

The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies

Journal

ALZHEIMERS & DEMENTIA
Volume 14, Issue 8, Pages 1063-1076

Publisher

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

Funding

  1. California Department of Public Health [16-10054]
  2. Alzheimer's Association [BHR-16-459161]
  3. Global Alzheimer's Platform Foundation
  4. Alzheimer's Drug Discovery Foundation [20150802]
  5. Larry L. Hillblom Foundation [2015-A-011-NET]
  6. Monell Chemical Senses
  7. Patient Centered Outcomes Research Institute [PPRN-1501-26817]
  8. VU University Medical Center
  9. Janssen Pharmaceutica
  10. Biogen, Inc. [174552]
  11. Ray and Dagmar Dolby Family Fund
  12. Rosenberg Alzheimer's Project
  13. 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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