Data Protection and Privacy Statement

The International Atomic Energy Agency (IAEA) is committed to ensuring that all data submitted through the ZODIAC Disease Phenotype Observatory portal are handled in accordance with the highest standards of data protection, confidentiality, and integrity. Data Submission and Anonymisation Participating institutions are required to anonymise all patient-related data locally before submission to the ZODIAC Disease Phenotype Observatory portal. This process must ensure that no personal data can be attributed to a specific individual without the use of additional information, which must remain separate and protected through appropriate technical and organisational measures. Anonymisation must be carried out in line with:  The principles of the General Data Protection Regulation (GDPR) (EU) 2016/679, and  The Health Insurance Portability and Accountability Act (HIPAA) of the United States, where applicable. In accordance with Article 9 GDPR and 45 CFR §160.103 HIPAA, anonymised patient data must not include any of the following (non-exhaustive):

  • Racial or ethnic origin;
  • Religious or philosophical beliefs;
  • Genetic data;
  • Names, addresses, identification or social security numbers;
  • Health insurance details;
  • Trade union membership;
  • Financial information;
  • Biometric identifiers;
  • Any other health-related or personal information that could directly or indirectly

identify an individual and that is not essential to the ZODIAC Disease Phenotype Observatory. Data Handling and Security All data transferred to and stored within the ZODIAC Disease Phenotype Observatory portal are protected by secure communication protocols and access controls. Only authorised users designated by the IAEA will have access to the submitted data for the purposes of analysis and research within the framework of the ZODIAC Disease Phenotype Observatory.

Purpose and Retention

Anonymised data submitted through the portal will be used solely for scientific and public health purposes consistent with the objectives of the ZODIAC Disease Phenotype Observatory. Data will be retained only as long as necessary to achieve these purposes and will be deleted or archived securely in accordance with IAEA data management policies. Responsibilities and Contact By submitting data through this portal, you confirm that:

  • You have complied with all applicable data protection and ethical requirements at your institution; and

  • All data have been fully anonymised prior to transfer.

For questions regarding data protection or privacy within ZODIAC, please contact: p.craviolatti@iaea.org