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. 2018 Aug;14(8):1063-1076.
doi: 10.1016/j.jalz.2018.02.021. Epub 2018 May 10.

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

Michael W Weiner  1 , Rachel Nosheny  2 , Monica Camacho  3 , Diana Truran-Sacrey  4 , R Scott Mackin  2 , Derek Flenniken  3 , Aaron Ulbricht  5 , Philip Insel  4 , Shannon Finley  4 , Juliet Fockler  5 , Dallas Veitch  4
Affiliations

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

Michael W Weiner et al. Alzheimers Dement. 2018 Aug.

Abstract

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.

Keywords: Alzheimer's disease; Clinical trial recruitment; Internet registry; Neuroscience clinical research studies; Online neuropsychological tests.

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Figures

Figure 1
Figure 1
Example of a BHR dashboard. The BHR dashboard offers up-to-date information to the BHR research team. The top navigation bar allows switching between baseline and follow-up visits. Total numbers of consented participants and subtotals of participants enrolled in the previous day/week/month are represented by the circles beneath. Completion of online questionnaires and cognitive tests are tracked bars at the bottom, and these are also available on an individual level. Also available, but not depicted in this figure, are demographic information and referral sources.
Figure 2
Figure 2
Cumulative enrollment of BHR participants. Daily cumulative totals of enrolled BHR participants until January 15, 2018.
Figure 3
Figure 3
Location of BHR participants. Heat map of the geographical distribution of BHR participants who claim residence in the United States based on self-report data.
See this image and copyright information in PMC

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