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

Weiner, Michael W.; Nosheny, Rachel L.; Camacho, Monica R.; Truran‐Sacrey, Diana; Mackin, R. Scott; Flenniken, Derek; Ulbricht, Aaron; Insel, Philip S.; Finley, Shannon; Fockler, Juliet; Veitch, Dallas P.

doi:10.1016/j.jalz.2018.02.021

Cited by 100 publications

(170 citation statements)

References 28 publications

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“…Internet assessment of brain health and cognitive assessment are growing. The Brain Health Registry (Weiner et al, 2018) uses online strategies to assess cognitive function and refer potential participants to clinical trials. The Alzheimer Prevention Trial (APT) web study uses similar approaches to online assessment with the goal of referring cognitively normal persons to clinical trials for the prevention of AD.…”

Section: Effects Of Computer and Internet Use On Brain Healthmentioning

confidence: 99%

Brain health INnovation Diplomacy: a model binding diverse disciplines to manage the promise and perils of technological innovation

Ternes

Iyengar

Lavretsky³

et al. 2020

Int. Psychogeriatr.

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Background: Brain health diplomacy aims to influence the global policy environment for brain health (i.e. dementia, depression, and other mind/brain disorders) and bridges the disciplines of global brain health, international affairs, management, law, and economics. Determinants of brain health include educational attainment, diet, access to health care, physical activity, social support, and environmental exposures, as well as chronic brain disorders and treatment. Global challenges associated with these determinants include large-scale conflicts and consequent mass migration, chemical contaminants, air quality, socioeconomic status, climate change, and global population aging. Given the rapidly advancing technological innovations impacting brain health, it is paramount to optimize the benefits and mitigate the drawbacks of such technologies. Objective: We propose a working model of Brain health INnovation Diplomacy (BIND). Methods: We prepared a selective review using literature searches of studies pertaining to brain health technological innovation and diplomacy. Results: BIND aims to improve global brain health outcomes by leveraging technological innovation, entrepreneurship, and innovation diplomacy. It acknowledges the key role that technology, entrepreneurship, and digitization play and will increasingly play in the future of brain health for individuals and societies alike. It strengthens the positive role of novel solutions, recognizes and works to manage both real and potential risks of digital platforms. It is recognition of the political, ethical, cultural, and economic influences that brain health technological innovation and entrepreneurship can have. Conclusions: By creating a framework for BIND, we can use this to ensure a systematic model for the use of technology to optimize brain health.

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Section: Effects Of Computer and Internet Use On Brain Healthmentioning

confidence: 99%

Brain health INnovation Diplomacy: a model binding diverse disciplines to manage the promise and perils of technological innovation

Ternes

Iyengar

Lavretsky³

et al. 2020

Int. Psychogeriatr.

View full text Add to dashboard Cite

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“…The BHR is well resourced through several strong partnerships (ie, the Global Alzheimer's Platform Foundation; the Alzheimer's Association; support from academic and philanthropic sponsors; and celebrity endorsements) enabling clinical trials both locally and internationally. Currently, the BHR has approximately 57,000 participants worldwide …”

Section: National Registries For Alzheimer's Disease Studiesmentioning

confidence: 99%

“…The Banner Health Alzheimer's Prevention Registry reports <7% in under‐represented groups including African Americans, Native Americans, and Hispanics and approximately 47% of members preferring not to provide race/ethnicity (personal conversation with Jessica Langbaum, PhD, Principal Scientist and Co‐Director of the Alzheimer's Prevention Initiative) but is focusing more effort on increasing the diversity of its Registry. The BHR has an emphasis on diversity and has achieved higher percentages in many under‐represented groups, with 4.5% African American, 5.3% Hispanics, and 3.2% Asian . Despite these promising gains, challenges persist in engaging diverse communities to participate.…”

Section: National Registries For Alzheimer's Disease Studiesmentioning

confidence: 99%

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Cocroft

Welsh‐Bohmer

Plassman

et al. 2020

Alzheimer's & Dementia

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Introduction The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and “research ready” cohort of cognitively healthy volunteers. Methods The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. Results The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. Discussion We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.

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“…Population studies, including the data in the Veterans Administration, could be analyzed to determine a relationship between drug treatments and diagnosis [73,74]. There are numerous registries of subjects which have been developed and have information about medications and progression over time [75]. Ultimately, a double-blind study should be conducted comparing trazodone to another sleep-inducing substance, such as melatonin, also comparing the long-term outcomes with placebo control, using sensitive measures of cognitive function [76] and sleep to determine the mechanism of action and suggest further directions.…”

Section: Trazodone Sleep and Future Development For Alzheimer's Dismentioning

confidence: 99%

Treatment of Alzheimer’s Disease: Trazodone, Sleep, Serotonin, Norepinephrine, and Future Directions

Ashford

2019

JAD

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In this issue, an article by La et al. provides evidence that trazodone delayed cognitive decline in 25 participants with Alzheimer's disease (AD), mild cognitive impairment, or normal cognition. For participants considered to have AD pathology, trazodone non-users declined at a rate 2.4 times greater than those taking trazodone for sleep over a 4-year period. In the analysis of sleep complaints, the relationship between trazodone, a widely used medication for sleep problems in the elderly, and cognition was associated with subjective improvement of sleep disruption. Due to the design of the study, it was not possible to prove that the benefit of slowing cognitive decline was due specifically to the improvement in sleep. However, trazodone uniquely improves the deeper phases of slow-wave sleep. Other sedative medications are generally associated with worse cognitive function over time, and they do not improve sleep characteristics as does trazodone. Trazodone has a variety of effects on several monoaminergic mechanisms: a potent serotonin 5-HT2A and ␣1-adrenergic receptor antagonist, a weak serotonin reuptake inhibitor, and a weak antihistamine or histamine H1 receptor inverse agonist. Because of the potential importance of this finding, further discussion is provided on the roles that trazodone may play in the modulation of monoamines, cognition, and the development of AD. If trazodone really does provide such a dramatic slowing in the development of dementia associated with AD, a great deal more research on trazodone is needed, including environmental and behavioral factors related to improvement of sleep, energy management, and neuroplasticity.

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

Abstract: 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.

Cited by 100 publications

References 28 publications

Brain health INnovation Diplomacy: a model binding diverse disciplines to manage the promise and perils of technological innovation

Brain health INnovation Diplomacy: a model binding diverse disciplines to manage the promise and perils of technological innovation

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Treatment of Alzheimer’s Disease: Trazodone, Sleep, Serotonin, Norepinephrine, and Future Directions

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