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://sharing.nih.gov/data-management-and-sharing-policy

• About Data Management & Sharing Policies

• https://sharing.nih.gov/data-management-and-sharing-policy/about-data-management-and-sharing-policies

• Planning and Budgeting for Data Management & Sharing

• https://sharing.nih.gov/data-management-and-sharing-policy/planning-and-budgeting-for-data-management-and-sharing

• Data Management

• https://sharing.nih.gov/data-management-and-sharing-policy/data-management

NIH GENOMIC DATA SHARING POLICY

• https://sharing.nih.gov/genomic-data-sharing-policy

• About Genomic Data Sharing Policy

• https://sharing.nih.gov/genomic-data-sharing-policy/about-genomic-data-sharing/gds-policy-overview

• Developing Genomic Data Sharing Plans

• https://nexus.od.nih.gov/all/2023/03/20/data-management-and-sharing-plan-vs-resource-sharing-plan/

• Institutional Certifications

• https://sharing.nih.gov/genomic-data-sharing-policy/institutional-certifications

• dbGaP Study Submission Guide

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

OTHER NIH SHARING POLICIES

• https://sharing.nih.gov/other-sharing-policies

• Model Organism Sharing Policy

• https://sharing.nih.gov/other-sharing-policies/model-organism-sharing-policy

• Research Tools Policy

• https://sharing.nih.gov/other-sharing-policies/research-tools-policy

• NIH Institute and Center Data Sharing Policies

• https://sharing.nih.gov/other-sharing-policies/nih-institute-and-center-data-sharing-policies

WHICH POLICIES APPLY TO MY RESEARCH?

• https://sharing.nih.gov/other-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
• https://privacyruleandresearch.nih.gov/pr_08.asp

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)

• 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

• Data management Sharing Plan vs Resource Sharing Plan

• Data management Sharing Plan vs Resource Sharing Plan