Evidence map›Paper›PMID 32920626›Full record

ArticleThe journal of prevention of Alzheimer's disease2020

The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies.

J B Langbaum, N High, J Nichols, C Kettenhoven, E M Reiman, P N Tariot

Registry-linked trialAbstract read
In one paragraph

Article in The journal of prevention of Alzheimer's disease, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02022943 (Alzheimer's Prevention Registry), which is not on this map. Cited by 45 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
45citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02022943 recruitingnot on this map

Alzheimer's Prevention Registry

Typeobservational_patient_registrySponsorBanner HealthRan2012 to 2030Enrolled500,000ConditionsAlzheimer's Disease, Dementia
3 · Its place in the literature

Who cites it

45 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Review
  5. Article
  6. Article
  7. The Alzheimer's Association TrialMatch-Increasing awareness of all dementia trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Article
  8. Development of a web platform to advance data-driven recruitment for ADRD research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  9. Article
  10. Article
  11. Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer's-Focused Research Registries.Health education & behavior : the official publication of the Society for Public Health Education · 2025
    Article
  12. Lessons from a Pilot Study of a Culturally Tailored Financial Well-Being Intervention Among Latino Family Caregivers.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025
    Article
  13. Synergies, Discrepancies, and Action Priorities: A Statewide Engagement Study to Strengthen Clinical Research in Cerebral Palsy.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
  14. Increased reliance on heuristic thinking in mild cognitive impairment.Neuropsychology, development, and cognition. Section B, Aging, neuropsychology and cognition · 2025
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

J B LangbaumJessica B. Langbaum, Ph.D. Banner Alzheimer's Institute, 901 E. Willetta Street, Phoenix, AZ, 85006, USA, Tel.: 602-839-2548, Fax: 602-839-6936, Email: Jessica.Langbaum@bannerhealth.com.
N High
J Nichols
C Kettenhoven
E M Reiman
P N Tariot

Funding

Research Education ComponentP30AG019610 · NIA · SUN HEALTH RESEARCH INSTITUTE · PI REIMAN, ERIC MICHAEL · 2001 to 2020
$32.5M
Establishing the science behind Alzheimer's recruitment registries: opportunities for increasing diversity and accelerating enrollment into trialsR01AG063954 · NIA · BANNER HEALTH · PI BLEAKLEY, AMY, LANGBAUM, JESSICA BROOKE · 2019 to 2023
$9.6M
NIA NIH HHS P30 AG019610NIA NIH HHS R01 AG063954
6 · The paper itself

Abstract

backgroundRecruitment for Alzheimer's disease (AD)-focused studies, particularly prevention studies, is challenging due to the public's lack of awareness about study opportunities coupled with studies' inclusion and exclusion criteria, resulting in a high screen fail rate.

objectivesTo develop an internet-based participant recruitment registry for efficiently and effectively raising awareness about AD-focused study opportunities and connecting potentially eligible volunteers to studies in their communities.

methodsIndividuals age 18 and older are eligible to join the Alzheimer's Prevention Registry (APR). Individuals provide first and last name, year of birth, country, and zip/postal code to join the APR; for questions regarding race, ethnicity, sex, family history of AD or other dementia, and diagnosis of cognitive impairment, individuals have the option to select "prefer not to answer." The APR website maintains a list of recruiting studies and contacts members who have opted in by email when new studies are available for enrollment.

resultsAs of December 1, 2019, 346,661 individuals had joined the APR. Members had a mean age of 63.3 (SD 11.7) years and were predominately women (75%). 94% were cognitively unimpaired, 50% reported a family history of AD or other dementia, and of those who provided race, 76% were white. 39% joined the APR as a result of a paid social media advertisement. To date, the APR helped recruit for 82 studies.

conclusionsThe APR is a large, internet-based participant recruitment registry designed to raise awareness about AD prevention research and connect members with enrolling studies in their communities. It has demonstrated the ability to recruit and engage a large number of highly motivated members and assist researchers in meeting their recruitment goals. Future publications will report on the effectiveness of APR for accelerating recruitment and enrollment into AD-focused studies.

Indexed as

Patient SelectionRegistriesAgedAlzheimer DiseaseClinical Trials as TopicFemaleHumansInternetLongitudinal StudiesMaleMiddle AgedAlzheimer’s diseaserecruitmentRegistry

Identifiers

PMID32920626
PMCPMC7534299

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.