With appropriate ethics committee and Health Research Authority privacy committee approval, identifiers (name and date of birth) from pre-2007 clinical records for a cohort study of patients in the UK with paediatric endocrine disorders or cytogenetic disorders were sent to the Office for National Statistics, NHS Scotland, and NHS Digital, who have and continue to notify the study of cancer registrations and mortality (cause and date of death information sources from civil registration data). These data are used by the ICR for analysis of risk factors for cancer and mortality in the cohort.

The ICR is the data controller for this study. The ICR collect special category data (health information) for the purposes of this study. The lawful basis for processing this information is for the performance of a task carried out in the public interest. The ICR processes sensitive health and genetic information for the purposes of scientific research with appropriate safeguards in place to protect personal information, as required by the EU General Data Protection Regulation.  

Individuals have the right to request from the controller access to and rectification or erasure of the personal data, or restriction of processing of personal data, or to object to the processing of such personal data, as well as data portability. No automated decision-making, including profiling is carried out on these data.

If you think that you may have been included in this study and want further information or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post; 

ICR Data Protection Officer,
123 Old Brompton Road,
London,
SW7 3RP

If you feel we have breached your rights under GDPR you have the right to lodge a complaint with the Information Commissioners Office.