Will data about me be shared during the study?

Personally identifiable data about you will only be shared with authorised third parties (see previous section), NHS organisations and national registries so that the health data about you can be provided to the study, healthcare regulators (such as the MHRA or U.S. FDA), and other statutory bodies or Boehringer Ingelheim during an audit or inspection.

The University of Oxford is convinced that access to trial data advances clinical science and medical knowledge and is in the best interest of patients and public health, provided that patient privacy is protected. Therefore, de-personalised data – data which has had identifying information removed – may be shared with healthcare regulators, other credible researchers and Boehringer Ingelheim for the purposes of finding out more about kidney disease. De-personalised data about you will only be shared with legal safeguards to protect the data. De-personalised data may be sent outside the UK and EU. A legal contract will ensure that anyone receiving these data must follow our rules about keeping these data safely.

If any foreign country to which de-identified data is transferred does not have equivalent data protection standards to those required in the UK, appropriate safeguards will be adopted to protect and maintain the confidentiality of your data and blood/urine samples (including using standard data protection clauses adopted by the European Commission, where relevant). If you require any information about these safeguards, you may contact us: data.protection@admin.ox.ac.uk.

De-personalised data has had identifying information removed however it might be possible to re-identify the individual if the data are not adequately protected or if it is combined with different sources.

De-personalised data are a bit like the blurred photograph: if you already knew quite a lot about the individual (for
example where the photograph was taken and what they were wearing) it might be possible to identify them, but they are not recognisable just from the photo. 

As already explained above, it is really very hard for anyone to re-identify you after de-identification as we use special measures to protect data, but it remains theoretically possible. The “de-identified” data in this study will be used for the following purposes: analysis of the study results, to help learn more about how the study treatment works in the body, to do future research, to write scientific articles on kidney diseases and associated health problems, and to help design and conduct future studies.

Oxford and Boehringer Ingelheim (including Boehringer Ingelheim group of companies) may process and combine
data from this study with data from other sources (always using appropriate safeguards) and may carry out these
activities alone or in collaboration with public or commercial private partnerships (ie third parties) in the areas of research described above.