Maintaining participant privacy and confidentiality is a key priority for IDDO. IDDO has robust technical and statistical solutions to ensure the security and anonymity of data.
Personal identifiers are removed in compliance with the HIPAA Safe Harbor process for anonymisation. Dates and geographic locations are retained when considered important to the scientific integrity of data. . At the point of submission, data are immediately encrypted and automatically copied from an upload server to a high compliance server. Following checks, the data on the high compliance server are deleted. Further checks are undertaken and disclosure controls applied to dates and geographic locations to ensure that the risk of identification is minimised before data are released to researchers.
There are strong ethical grounds for sharing data and significant benefits for data contributors and the research community. For information on the benefits of sharing data, please see ‘Benefits of data sharing’.
If you have any questions about data security or research ethics, please email firstname.lastname@example.org.