Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Disclosing and Sharing Results
Displaying 1 - 9 of 9 resources.
- This article provides a framework for planning disclosure and consent procedures for research studies involving participants with dementia.
- This video explains how participants in LEADS, an NIA-funded study, can choose whether or not to receive genetic results and what these results mean.
Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials That Incorporate Multiple Genetic and Biomarker Research ResultsUsing research results, Alzheimer's disease scientists developed materials that communicate information to participants about the risk of developing Alzheimer's.
Using Direct-to-Consumer Genetic Testing Results to Accelerate Alzheimer Disease Clinical Trial RecruitmentResearchers assessed direct-to-consumer APOE genetic testing usage and their attitudes toward using this information in clinical trial recruitment.
- Gene Test or Not? is an online decision-making tool designed to help people decide about whether they should have the APOE genetic test.
Development of a Standardized Approach to Disclosing Amyloid Imaging Research Results in Mild Cognitive ImpairmentThis paper describes the development of a standardized approach to disclosing amyloid imaging research results to people with mild cognitive impairment.
Development of a Process to Disclose Amyloid Imaging Results to Cognitively Normal Older Adult Research ParticipantsThe authors developed a document for use with potential study participants that describes the process of amyloid imaging and the implications of amyloid imaging results.
Alzheimer’s Prevention Initiative Generation Program: Development of an APOE Genetic Counseling and Disclosure Process in the Context of Clinical TrialsThis paper outlines a framework created by the Alzheimer’s Prevention Initiative Genetic Testing, Counseling, and Disclosure Committee for large-scale disclosure of APOE results to study participants.
- This online toolbox offers resources from Clinical & Translational Science Awards (CTSA) programs, and their community health partners, to help investigators across the life cycle of their projects.