Infectious, Allergic, and Immune-Mediated Disease Data Resources: a Landscape Overview and Subset Assessment.

Abstract

The Data Management and Sharing (DMS) Policy issued by the National Institutes of Health (NIH) requires most grant applications to include a DMS Plan, detailing data type(s), resources (e.g., data repositories, knowledgebases, portals) for data sharing, and a dissemination timeline. Researchers face challenges navigating the complex data landscape to identify data resources to fulfill the DMS Policy requirements. The National Institute of Allergy and Infectious Diseases (NIAID) aims to support researchers in preparing DMS Plans for applications that align with its mission areas. To support depositing and accessing infectious, allergic, and immune-mediated disease (IID) data, we compiled a list of IID data resources. The list was developed by reviewing online resources and collecting recommendations from subject matter experts. Additionally, we developed a questionnaire based on NIH recommendations and community best practices to characterize a subset of IID data resources that support data submissions. We identified 303 data resources, 58 of which focused on IID data. Most were categorized as General Infectious Diseases and Pathogens (n = 29, 50%), followed by Respiratory Pathogens (n = 10, 17%). Scientific content included "omics" (n = 37, 64%), clinical (n = 21, 36%), and biological assay data (n = 20, 34%). Open access data was common (n = 39, 67%), with fewer offering controlled access (n = 20, 34%) or required registration (n = 4, 7%). Among 19 resources accepting data submissions, eight (42%) required registration, seven (37%) needed additional approvals, and four (21%) required network membership. Fifteen (79%) resources provided metadata access, with 11 (58%) assigning persistent identifiers. Twelve (63%) offered APIs, 13 (68%) provided analytical tools, and 10 (53%) featured workspaces. Risk management documentation was available for 10 (53%), and five (26%) provided data retention policies. We assessed 58 data resources in the IID domain, identifying 19 that support data submission and are therefore suitable for NIH DMS Plans. Our findings reveal both the breadth of available resources, and the challenges related to inconsistent data submission requirements and data management practices. Enhancing transparency and standardization across data resources will support more effective data sharing, enhance findability, and aid researchers in selecting appropriate resources for DMS Plans and secondary data analysis.