Relevant Information to Help Investigators Develop Resources Management and Sharing Plans

NIH DATA MANAGEMENT & SHARING POLICY

• https://oir.nih.gov/sourcebook/intramural-program-oversight/intramural-data-sharing/2023-nih-data-management-sharing-policy
• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/dms

• About Data Management & Sharing Policies

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/dms/policy-overview

• Planning and Budgeting for Data Management & Sharing

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/dms/budgeting-for-data-management-sharing

• Data Management

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/dms/data-management

• Updated Elements of an NIH Data Management and Sharing Plan

• https://grants.nih.gov/grants/guide/notice-files/NOT-OD-26-046.html

NIH GENOMIC DATA SHARING POLICY

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/gds

• About Genomic Data Sharing Policy

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/gds/overview

• Developing Genomic Data Sharing Plans

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/gds/developing-genomic-data-sharing-plans

• Institutional Certifications

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/gds/institutional-certifications

• dbGaP Study Submission Guide

• https://www.ncbi.nlm.nih.gov/gap/docs/submissionguide/

OTHER NIH SHARING POLICIES

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/other

• Model Organism Sharing Policy

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/other/model-organism

• Research Tools Policy

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/other/research-tools

• NIH Institute and Center Data Sharing Policies

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/other/ics-sharing-policies

WHICH POLICIES APPLY TO MY RESEARCH?

• https://grants.nih.gov/policy-and-compliance/policy-topics/sharing-policies/which-policies-apply-to-my-research

HIPAA PRIVACY RULE IN RESEARCH

• https://www.hhs.gov/hipaa/for-professionals/special-topics/research/index.html

INFORMED CONSENT RESOURCE FOR SECONDARY RESEARCH WITH DATA AND BIOSPECIMENS

• Informed Consent Resource for Secondary Research with Data and Biospecimens (PDF - 1,218 KB)

INFORMED CONSENT FOR RESEARCH USING DIGITAL HEALTH TECHNOLOGIES: POINTS TO CONSIDER & SAMPLE LANGUAGE

• https://osp.od.nih.gov/wp-content/uploads/2024/05/DigitalHealthResource_Final.pdf

PREPARING RESOURCES for SHARING

• Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule

• https://www.hhs.gov/hipaa/for-professionals/special-topics/de-identification/index.html

• NIH Data Sharing Catalog

• https://www.nlm.nih.gov/NIHbmic/domain_specific_repositories.html

• NIH Common Data Elements

• https://cde.nlm.nih.gov/home

• NIA Data Sharing Resources for Researchers

• https://www.nia.nih.gov/research/data-sharing-resources-researchers

• Preparation and Submission of Datasets and Documents for the AgingResearchBiobank

• Preparation and Submission of Datasets and Documentation (PDF - 1,200 KB)

• Data Submission Worksheet for the AgingResearchBiobank

• Data Submission Worksheet (DOCX - 88.8 KB)

• Preparation and Submission of Biospecimen Collections for the AgingResearchBiobank

• Preparation and Submission of Biospecimen Collections (PDF - 572.8 KB)

• Contamination Risks in Biospecimens

• Cross-contamination risk management in biobanking (PDF - 228 KB)
• COVID-19 Resources (PDF - 201 KB)

• Submit Biospecimens and Related Phenotypic and Clinical Datasets to the AgingResearchBiobank

• Submit Biospecimens and Related Phenotypic and Clinical Datasets

• Submit Phenotypic and Clinical Datasets to the AgingResearchBiobank

• Submit Phenotypic and Clinical Datasets

DEVELOP SHARING PLANS

• The TRUST Principles for digital repositories

• The TRUST Principles for digital repositories

• 2026 Pilot Data Management and Sharing Plan Format

• https://grants.nih.gov/news-events/nih-extramural-nexus-news/2026/04/2026-pilot-data-management-and-sharing-plan-format-available