Return of research results across the Alzheimer's Disease Research Centers network.

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.