Data sharing practices and experiences among Alzheimer's disease and related dementia researchers.

INTRODUCTION

Data sharing among investigators of Alzheimer's disease and related dementias (ADRD) allows for representative datasets, supports reproducibility, and increases rigor. Yet limited evidence on investigators' practices and experiences precludes solutions that promote optimal practices.

METHODS

A cross-sectional survey of US-based ADRD investigators with National Institutes of Health awards funded between 2016 and 2019.

RESULTS

Among 585 respondents (response rate of 64.5%), 62.9% were engaged in data sharing in the previous 5 years. Among data requesters, 61.8% reported that all requests were fulfilled within 6 months. Among those who received requests, 85.1% reported fulfilling all requests. Reasons for declining requests included existing data use agreement requirements, Institutional Review Board standards, and resource limitations. Respondents who shared data reported positive consequences (e.g., developing collaborations) more often than negative (e.g., being "scooped").

DISCUSSION: Data sharing behaviors among ADRD researchers are encouraging. Nevertheless, addressing remaining barriers could help avoid the negative consequences of data requests not being fulfilled.

HIGHLIGHTS: Data sharing is critical to advancing research in ADRD. Investigators are engaged in data sharing through initiating or receiving requests. Most data requests initiated or received by ADRD investigators are fulfilled. Investigators who fulfill requests report positive experiences with sharing data. Delay or decline of requests can result in consequences that impede research.