Data Sharing Toolkit: Consent, Legal & Privacy Resources for ADRD Data Sharing
Legal and regulatory uncertainty is one of the biggest barriers to ADRD data sharing. This toolkit curates trusted resources including consent templates, data use agreement models, GDPR and HIPAA guidance, and NIH data management and sharing plan tools to help researchers navigate these issues with confidence.
Data Sharing Considerations, by Topic
Informed Consent
When working on a new or ongoing study, the language in a participant's consent form determines what you can and can't share later. The section below includes model consent language for new studies, guidance for navigating consent in studies that didn't originally plan for data sharing, and template data use agreements for when you're ready to share.
Genetics Data Sharing
Genetic and genomic data carries its own sharing considerations, from NIH-specific genomics policy to international standards of conduct. The section below links to NIA and NIAGADS guidance for Alzheimer's genomics data specifically, along with broader genomics data-sharing frameworks and training resources.
Privacy Regulations
Sharing ADRD research data across borders means complying with more than one privacy regime at once. The section below covers both GDPR (for data involving EU participants or researchers) and HIPAA (for U.S. protected health information), including practical guidance on de-identification and anonymization.
Data Sharing Planning and Management
Most funders now expect a formal data management and sharing plan before research even begins. The section below includes NIH's Policy for Data Management and Sharing, planning checklists and templates for grant applications, and broader guidance on managing data responsibly throughout a study's lifecycle.
Technical Requirements
Once you're ready to share data, choosing where to host it matters. The section below lists NIH-recognized data sharing repositories and key interoperable data platforms including CPAD, DPUK, and GAAIN along with guidance on budgeting for data-sharing costs in grant applications.
Data Sharing Tools, by Topic
Informed Consent
Genetics Data Sharing
Privacy Regulations
Data Sharing Planning and Management
Technical Requirements and Other Resources
A Data Sharing Decision Tree
Use this decision tree to help determine if consent forms permit sharing data with third parties for secondary research on Alzheimer's disease.