LibGuides: SOM Data Management: Discovery and Sharing

NLM Strategic Plan

NLM's vision is to "refocus and enhance its research development, training, and information services to make more biomedical data findable, accessible, interoperable, and reusable, to invent the tools and services to turn data and information into knowledge and insight, and to develop the workforce capable of doing so."

Source: U.S. National Library of Medicine. A Platform for Biomedical Discovery and Data-Powered Health. Strategic Plan 2017-2027.

FAIR Principles

Image Source: https://libereurope.eu/wp-content/uploads/2017/12/LIBER-FAIR-Data.pdf

Data Sharing

Benefits of Data Sharing

Image Source: https://researchdata.springernature.com/channels/1421-resources/posts/21396-open-data-infographic

Data Discovery Resources

Zucker School of Medicine at Hofstra/Northwell Data Catalog
A website tool to facilitate researchers’ discovery of data by providing a searchable and browsable online collection of records describing datasets generated by ZSOM, Northwell Health, and Feinstein Institute researchers.
DataMed
A prototype biomedical data search engine that will allow users to discover data sets across data repositories or data aggregators.
re3data
A global registry of research data repositories that cover a wide range of academic disciplines.re3data presents repositories for the permanent storage and access of data sets to researchers, funding bodies, publishers and scholarly institutions.
DataONE
A community driven project providing access to data across multiple member repositories, supporting enhanced search and discovery of Earth and environmental data
Our World in Data
Our World in Data (OWID) is an open access scientific online publication that focuses on large global problems such as poverty, disease, hunger, climate change, war, existential risks, and inequality.

Directory of Open Access Repositories (DOAR)
A directory of open access repositories.
Dryad
A repository of data underlying scientific and medical publications.
FAIRsharing
A repository of standards, databases, and policies for the life and biomedical sciences.
Figshare
Figshare enables academics to upload, share, cite and importantly discover all manner of research outputs with the security of knowing our hosting options and platform support long term preservation of data.
Gene Expression Omnibus
GEO is a public functional genomics data repository supporting MIAME-compliant data submissions.
ICPSR
A data archive of more than 250,000 files of research in the social and behavioral sciences.
Mendeley Data
An open research data repository, where researchers can upload and share their research data. Datasets can be shared privately amongst individuals, as well as published to share with the world.
National Institute of Mental Health Data Archive (NDA)
The National Institute of Mental Health Data Archive (NDA) makes available human subjects data collected from hundreds of research projects across many scientific domains.
NIH Data Sharing Repositories
A list of NIH-supported data repositories that make data accessible for reuse.
Protocols.io
Repository for methods and protocols in the life sciences
Zenodo
An all-purpose open-access repository developed under the European OpenAIRE program and operated by CERN.

The following are characteristics identified by the BMIC as being desirable characteristics of data repositories:

Persistent unique identifiers
Long-term sustainability
Metadata
Curation & quality assurance
Maximally open access
Tracking data re-use
Free of charge
Secure
Common format
Provenance

Additional considerations for repositories involving human data:

Fidelity to consent
Restricted use compliant
Privacy
Plan for breach
Download audit and control
Clear use guidance
Retention guidance
Plan for use violations
Request review

Source: Huerta MF. Strategic Approaches to Data Science & Open Science: Research Data Management. Presented at: Research Data Management Symposium; 2019 Dec 5; New York, NY.

Data Management and Sharing Policies

NIH Current Data Management and Sharing Policy
In effect since 2003, remains in effect until January 25, 2023.
NIH Updated Policy for Data Management and Sharing
Release Date: October 29, 2020; Effective Date: January 25, 2023
NIH Data Sharing Policies
Policies at the NIH, IC, division, and program levels that apply to broad sets of investigators and data.
NSF Data Management and Sharing Requiements
ICMJE Data Sharing Statement for Clinical Trials
Requirements for manuscripts submitted to ICMJE (International Committee of Medical Journal Editors) journals that report the results of clinical trials.

Click for a list of ICMJE journals

Data Citation

Data Citation (Research Data Management Service Group, Cornell University)
Provides information on the benefits of citing data, how to cite data, and examples of data citations.

Contact Us

For questions or comments, email us at medicine.datacatalog@hofstra.edu.