Annalise Rahman-Filipiak, Nathaniel A. Chin, Haley Kohl, Jonathan M. Reader, Claire M. Erickson, Bradford C. Dickerson, Neelum T. Aggarwal, Sterling C. Johnson, Elizabeth C. Mormino, Lindsay R. Clark
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引用次数: 0
Abstract
INTRODUCTION
The Consortium for Clarity in Alzheimer's Disease and Related Dementias Through Imaging (CLARiTI) Return of Results Core aims to develop tools and a framework for disclosing individual results at Alzheimer's Disease Research Centers (ADRCs). An understanding of current disclosure practices is necessary to generate this protocol.
METHODS
All 37 ADRCs received a survey between January and April 2024; 36 provided valid responses.
RESULTS
Most ADRCs disclose diagnosis and cognitive results to participants with impairment, and disclosure of biomarker data (e.g., amyloid and tau positron emission tomography) has accelerated since 2019. Though less common, disclosure to unimpaired participants has increased since 2019. Motivators for disclosure include to thank participants, for recruitment/retention, and to help inform health-care decisions. Barriers include limited expertise and infrastructure, concerns about clinical actionability, and risks to participants.
DISCUSSION
The ADRC network is invested in sharing research results. While some concerns remain, CLARiTI will critically evaluate a standardized approach to sharing these results.
Highlights
Individual research results disclosure has increased significantly since 2019.
Results are shared more frequently with cognitively unimpaired participants.
Disclosure requires interdisciplinary teams including physicians and psychologists.
Disclosure motivations include enhancing retention and supporting clinical care.
Barriers include limited resources/expertise and potential participant risks.
期刊介绍：
Alzheimer's & Dementia is a peer-reviewed journal that aims to bridge knowledge gaps in dementia research by covering the entire spectrum, from basic science to clinical trials to social and behavioral investigations. It provides a platform for rapid communication of new findings and ideas, optimal translation of research into practical applications, increasing knowledge across diverse disciplines for early detection, diagnosis, and intervention, and identifying promising new research directions. In July 2008, Alzheimer's & Dementia was accepted for indexing by MEDLINE, recognizing its scientific merit and contribution to Alzheimer's research.
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