The Brain Health Registry: An internet‐based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies. Issue 8 (10th May 2018)

• Record Type: Journal Article
• Authors: Weiner, Michael W.; Nosheny, Rachel; Camacho, Monica; Truran‐Sacrey, Diana; Mackin, R. Scott; Flenniken, Derek; Ulbricht, Aaron; Insel, Philip; Finley, Shannon; Fockler, Juliet; Veitch, Dallas
• Is Part Of: Alzheimer's & dementia. Volume 14:Issue 8(2018)
• Page Start: 1063
• Page End: 1076
• Publication Date: 2018-05-10
• Subjects: Internet registry -- Clinical trial recruitment -- Online neuropsychological tests -- Alzheimer's disease -- Neuroscience clinical research studies; Alzheimer's disease -- Periodicals; Alzheimer Disease -- Periodicals; Dementia -- Periodicals; Démence; Maladie d'Alzheimer; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 616.83
• DOI: 10.1016/j.jalz.2018.02.021
• Languages: English
• ISSNs: 1552-5260

Abstract

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.