Because IDDO provides pseudonymised rather than fully anonymised data, our governance processes are necessarily more complex. We take this approach because pseudonymised data is far more scientifically powerful — it retains all clinically valuable information, and allow researchers to answer deeper, more scientifically meaningful questions, driving better science and, ultimately, better health outcomes. We have more than 15 years of experience developing data governance for complex health data.

IDDO adheres to the 2016 FAIR Guiding Principles for scientific data management and stewardship, which promote the Findability, Accessibility, Interoperability and Reuse (FAIR) of data. These internationally recognised standards ensure that the valuable data contributed to IDDO can be discovered, understood and responsibly reused by the global research community.

Persistent identifiers and contributor recognition

• To make data more Findable, Accessible and Reusable, IDDO aims to assign Digital Object Identifiers (DOIs) to datasets hosted on its repositories.
• Each DOI provides a permanent, citable record of the study, including metadata about the researchers, study sites, funders, and associated publications.
• Citing the DOI (where available) is a condition of IDDO’s Data Use Agreement, which helps track data reuse and ensures that data contributors receive appropriate academic recognition.
• We mint DOIs via DataCite and linked to contributors’ ORCIDs and Contributor Roles Taxonomy (CRediT) entries — providing transparent credit for data creation and use.

Interoperability through IDDO Data Standards

• To make data Interoperable, our data managers curate and harmonise data on IDDO’s data platforms to the internationally recognised CDISC SDTM standards. These standards enable data from different studies using different methodologies to be analysed together, maximising the value of sparse data and enabling sufficient statistical power to uncover otherwise-hidden insights.
• Explore IDDO’s data tools and resources to see how we structure and standardise data for reuse and support your data analysis.

Transparency and registration

IDDO is formally registered with key international initiatives that promote responsible and transparent data sharing:

• FAIRsharing.org
• re3data.org

The IDDO Board, Scientific Advisory Committees (SACs), the independent Data Access Committee (DAC), and the IDDO Secretariat work together to ensure the effective governance and smooth operation of all of IDDO research platforms.