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

Michael W Weiner; Rachel Nosheny; Monica Camacho; Diana Truran-Sacrey; R Scott Mackin; Derek Flenniken; Aaron Ulbricht; Philip Insel; Shannon Finley; Juliet Fockler; Dallas Veitch

doi:10.1016/j.jalz.2018.02.021

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

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

Authors

Affiliations

¹ Department of Veterans Affairs Medical Center, Center for Imaging and Neurodegenerative Diseases, San Francisco, CA, USA; Department of Radiology and Biomedical Imaging, University of California, San Francisco, CA, USA; Department of Medicine, University of California San Francisco, San Francisco, CA, USA; Department of Psychiatry, University of California San Francisco, San Francisco, CA, USA; Department of Neurology, University of California San Francisco, San Francisco, CA, USA; Northern California Institute for Research and Education (NCIRE), Department of Veterans Affairs Medical Center, San Francisco, CA, USA. Electronic address: michael.weiner@ucsf.edu.
² Department of Veterans Affairs Medical Center, Center for Imaging and Neurodegenerative Diseases, San Francisco, CA, USA; Department of Psychiatry, University of California San Francisco, San Francisco, CA, USA.
³ Department of Veterans Affairs Medical Center, Center for Imaging and Neurodegenerative Diseases, San Francisco, CA, USA; Department of Radiology and Biomedical Imaging, University of California, San Francisco, CA, USA; Northern California Institute for Research and Education (NCIRE), Department of Veterans Affairs Medical Center, San Francisco, CA, USA.
⁴ Department of Veterans Affairs Medical Center, Center for Imaging and Neurodegenerative Diseases, San Francisco, CA, USA; Northern California Institute for Research and Education (NCIRE), Department of Veterans Affairs Medical Center, San Francisco, CA, USA.
⁵ Department of Veterans Affairs Medical Center, Center for Imaging and Neurodegenerative Diseases, San Francisco, CA, USA; Department of Radiology and Biomedical Imaging, University of California, San Francisco, CA, USA.

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Alzheimer Disease
Brain*
Clinical Trials as Topic*
Female
Humans
Internet*
Longitudinal Studies*
Male
Middle Aged
Neuropsychological Tests
Patient Selection*
Registries*
Surveys and Questionnaires

Abstract

Publication types

MeSH terms

Grants and funding