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

ABSTRACT:

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 agreeme

SUBMITTER: Arias JJ 

PROVIDER: S-EPMC12827494 | biostudies-literature | 2026 Jan

REPOSITORIES: biostudies-literature