Evidence map›Paper›PMID 25634646›Full record

Trial reportPublic health genomics2015

Factors affecting recall of different types of personal genetic information about Alzheimer's disease risk: the REVEAL study.

Andria G Besser, Saskia C Sanderson, J Scott Roberts, Clara A Chen, Kurt D Christensen, Denise M Lautenbach, L Adrienne Cupples, Robert C Green

Registry-linked trialOpen access · bronzeAbstract readMulticenter StudyRandomized Controlled Trial
In one paragraph

Trial report in Public health genomics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT00462917 (Risk Evaluation and Education for Alzheimer's Disease), which is not on this map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
1.0field-weighted citation impact, top 20% of its field
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.

NCT00462917 nacompletednot on this map

Risk Evaluation and Education for Alzheimer's Disease

TypeinterventionalSponsorBrigham and Women's HospitalRan2007 to 2009Enrolled290ConditionsAlzheimer DiseaseArmsPleiotropic info, in-person disclosure, AD-only info, in-person disclosure, Pleiotropic info, phone disclosure, AD-only info, phone disclosure
3 · Its place in the literature

Who cites it

13 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.

  1. Pooled it
  2. Trial
  3. Trial
  4. Predictors of genetic risk recall among the participants of a randomized controlled precision prevention trial against melanoma.Genetics in medicine : official journal of the American College of Medical Genetics · 2023
    Trial
  5. A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    Trial
  6. Article
  7. Article
  8. Review
  9. Review
  10. Article
  11. Review
  12. Article
  13. Article
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

8 authors at 4 institutions in 1 country.

Andria G BesserBonei Olam Center for Rare Jewish Genetic Disorders, Brooklyn, N.Y., USA.
Saskia C Sanderson
J Scott Roberts
Clara A Chen
Kurt D Christensen
Denise M Lautenbach
L Adrienne Cupples
Robert C Green
Harvard University Press · USIcahn School of Medicine at Mount Sinai · USJewish Hospital · USThe Coordinating Center · US

Funding

HARVARD CLINICAL AND TRANSLATIONAL SCIENCE CENTER (UL1)UL1RR025758 · NCRR · HARVARD MEDICAL SCHOOL · PI NADLER, LEE MARSHALL · 2008 to 2011
$91.4M
Neuropathology CoreP30AG013846 · NIA · BOSTON UNIVERSITY MEDICAL CAMPUS · PI KOWALL, NEIL W. · 1996 to 2020
$29.1M
YOGA INDUCED CHANGES IN BRAIN GABA LEVELSM01RR000533 · NCRR · BOSTON UNIVERSITY MEDICAL CAMPUS · PI ANTMAN, KAREN · 1985 to 2008
$19.4M
Risk Evaluation and Education for Alzheimer's Disease (REVEAL IV)R01HG002213 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 1999 to 2012
$7.6M
Impact of Direct to Consumer Genetic TestingR01HG005092 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C., ROBERTS, SCOTT · 2010 to 2012
$1.1M
Characterizing Communicating Genetic Risk Alzheimer'sK24AG027841 · NIA · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2006 to 2010
$914k
Incidental Finding Preferences in Whole Genome Sequencing: A Randomized TrialF32HG006993 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI CHRISTENSEN, KURT DEREK · 2012 to 2013
$102k
NCRR NIH HHS M01 RR000533NCRR NIH HHS M01RR00533NCRR NIH HHS UL1 RR025758NHGRI NIH HHS F32 HG006993NHGRI NIH HHS F32HG006993NHGRI NIH HHS R01 HG002213NHGRI NIH HHS R01HG002213NHGRI NIH HHS R01 HG005092NHGRI NIH HHS R01HG005092NIA NIH HHS K24 AG027841NIA NIH HHS K24AG027841NIA NIH HHS P30 AG013846NIA NIH HHS R01AG13846
6 · The paper itself

Abstract

methodsData were obtained through a multisite clinical trial in which different types of genetic risk-related information were disclosed to individuals (n = 246) seeking a risk assessment for Alzheimer's disease.

resultsSix weeks after disclosure, 83% of participants correctly recalled the number of risk-increasing APOE alleles they possessed, and 74% correctly recalled their APOE genotype. While 84% of participants recalled their lifetime risk estimate to within 5 percentage points, only 51% correctly recalled their lifetime risk estimate exactly. Correct recall of the number of APOE risk-increasing alleles was independently associated with higher education (p < 0.001), greater numeracy (p < 0.05) and stronger family history of Alzheimer's disease (p < 0.05). Before adjustments for confounding, correct recall of APOE genotype was also associated with higher education, greater numeracy and stronger family history of Alzheimer's disease, as well as with higher comfort with numbers and European American ethnicity (all p < 0.05). Correct recall of the lifetime risk estimate was independently associated only with younger age (p < 0.05).

conclusionsRecall of genotype-specific information is high, but recall of exact risk estimates is lower. Incorrect recall of numeric risk may lead to distortions in understanding risk. Further research is needed to determine how best to communicate different types of genetic risk information to patients, particularly to those with lower educational levels and lower numeracy. Health-care professionals should be aware that each type of genetic risk information may be differentially interpreted and retained by patients and that some patient subgroups may have more problems with recall than others.

Indexed as

Alzheimer DiseaseGenetic CounselingHealth LiteracyTeach-Back CommunicationAgedApolipoprotein E4DisclosureEthnicityFemaleGenetic TestingGenotypeHumansInformation Seeking BehaviorMaleMiddle AgedRiskApolipoprotein E4

Identifiers

PMID25634646
PMCPMC4470386
OpenAlexW1999421857

What OpenQuestion holds

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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.