Risk disclosure and preclinical Alzheimer's disease clinical trial enrollment

Alzheimers Dement. 2013 May;9(3):356-359.e1. doi: 10.1016/j.jalz.2012.03.001. Epub 2012 Nov 8.


To identify the facilitators and barriers to preclinical Alzheimer's disease (AD) clinical trial recruitment, 50 cognitively normal participants were interviewed after being randomized to one of two hypothetical AD risk scenarios: (1) the general age-related risk for AD, or (2) being at 50% increased risk for AD. Participants provided uncued barriers and facilitators to the hypothetical decision of whether they would enroll. Thirteen themes of facilitators and five themes of barriers were identified. The most common barrier was fear related to taking study drug. Those randomized to being at increased risk for AD more frequently cited lowering personal risk as a facilitator (P = .01) and less frequently cited time as a barrier to enrollment (P = .02). These results suggest potential challenges to preclinical AD clinical trial recruitment and that disclosing risk information may enhance enrollment.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Aged, 80 and over
  • Alzheimer Disease* / epidemiology
  • Alzheimer Disease* / prevention & control
  • Alzheimer Disease* / psychology
  • Cognition Disorders / epidemiology
  • Cognition Disorders / prevention & control
  • Cognition Disorders / psychology
  • Dementia / epidemiology
  • Dementia / prevention & control
  • Dementia / psychology
  • Disclosure*
  • Female
  • Humans
  • Incidence
  • Male
  • Middle Aged
  • Motivation*
  • Patient Participation / psychology*
  • Patient Participation / statistics & numerical data*
  • Patient Selection*
  • Prevalence
  • Risk Factors