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Table 1 Characteristics of studies included in the systematic review

From: Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review

Authors Year Country Study name Study design Study population (n) Disclosure Assessment timepoints Outcome measures
Studies on psychological effects
Romero et al. [30] 2005 USA   Cohort 76 APOE genotype 1 month, 4 months, 10 months Emotional reactions
Gooding et al. [25] 2006 USA REVEAL QRI Qualitative 60 APOE genotype >1 year Coping
Green et al. [23] 2009 USA REVEAL I RCT 162 APOE genotype Baseline, 6 weeks, 6 months, 1 year Anxiety, depression, test-related distress
Ashida et al. [31] 2010 USA REVEAL II RCT 269 APOE genotype Baseline, 6 weeks, 1 year Relation results communication and anxiety, depression and test-related distress
Lineweaver et al. [32] 2014 USA   Case–control 144 APOE genotype Mean 8.2 months post disclosure Objective and subjective memory functioning
Green et al. [29] 2014 USA REVEAL II RCT 343 APOE genotype Baseline, 6 weeks, 6 months, 1 year Anxiety, depression, distress
Studies on behavioral effects
Zick et al. [24] 2005 USA REVEAL I RCT 162 APOE genotype 6 weeks, 6 months, 1 year Insurance uptake
Chao et al. [22] 2008 USA REVEAL I RCT 162 APOE genotype 1 year Health-related behavior: diet, physical exercise, medication/vitamin intake
Vernarelli et al. [33] 2010 USA REVEAL II RCT 272 APOE genotype 6 weeks Health-related behavior: dietary supplement intake
Taylor et al. [34] 2010 USA REVEAL II RCT 276 APOE genotype Not reported Insurance uptake
Christensen et al. [27] 2015 USA REVEAL II/III RCT 795 APOE genotype 6 weeks, 1 year Insurance uptake, health-related behavior and other behavior changes
Hypothetical Caselli et al. [28] 2014 USA   Survey 4036 Hypothetical disclosure Not applicable Anticipated health-related behavior and other behavior changes
Studies on social effects
Ashida et al. [35] 2009 USA REVEAL II RCT 271 APOE genotype 6 weeks Results communication
Ashida et al. [31] 2010 USA REVEAL II RCT 269 APOE genotype Base, 6 weeks, 1 year Relation results communication and anxiety, depression and test-related distress
Chilibeck et al. [26] 2011 Canada/USA REVEAL I Qualitative 79 APOE genotype Not reported Risk perception in relation to family history
Hypothetical Caselli et al. [28] 2014 USA   Survey 4036 Hypothetical disclosure Not applicable Anticipated results communication
  1. Of the 14 studies included in the systematic review, two report on two types of effects and are taken up twice in this table. Ashida et al. [31] report on both psychological and social effects, and Caselli et al. [28] report on both behavioral and social effects
  2. APOE apolipoprotein E, RCT randomized controlled trial, REVEAL Risk Evaluation and Education for Alzheimer’s Disease Study