Data Sharing / Privacy Notice

Data Sharing

Data generated from clinical trials can be used to address many important research questions beyond those planned in the original trial. This has the potential to provide real benefit to patients and the scientific community.  

The Barts CTU has developed a Data Sharing policy [PDF 273KB] to facilitate controlled access to data from Barts CTU studies.

Data may be shared either by transferring the data out of the Barts CTU secure servers or by granting the recipient researcher access to the data while it remains on the Barts CTU secure servers. A Data Sharing Agreement is required for the former, and a Data Access Request for the latter. The Data Access Request is a simplified form of the Data Sharing Agreement which removes the need for institutional sign off and descriptions relevant to transfer of the data.

For all data sharing requests, please contact the Barts CTU Data Management team (bartsctu_dm@qmul.ac.uk).

Privacy notice

What is a privacy notice?

Personal data is data about people from which it is possible to identify those people (either directly, for example through their name, or indirectly, through for example, postcode, NHS number and other information). The U.K. General Data Protection Regulation (UK GDPR) is a law which sets out the key principles, rights and obligations for processing of personal data.

What is personal data?

Personal data is information about an individual that can be used to identify an individual, either directly (such as a name) or indirectly (such as a postcode or NHS number). The UK General Data Protection Regulation (UK GDPR) is a law which sets out the key principles, rights and obligations for processing of personal data.

How do we use your personal data?

As part of a publicly-funded organisation, the Barts CTU uses personal data to undertake research that serves the public interest. The legal basis for processing personal data is to perform a task carried out in the public interest (please refer to articles 6(1)(e) and 9(2)(j) of the UK GDPR).

Who is responsible for your data?

Each Barts CTU study is sponsored by a University or an NHS organisation. This organisation oversees the trial, including making decisions about what data will be collected and how the data will be managed and used.

Under the UK GDPR, the sponsoring organisation is the Data Controller for each study. Details about the organisation sponsoring a study you are involved in will be available in the patient information sheet for that study. Participants will also receive the sponsor’s contact details so that they know how to get in touch to raise any concerns regarding their personal data.

Each organisation will have its own privacy notice. Many of Barts CTU’s studies are sponsored by QMUL. Please see Privacy Notice for Research Participants [PDF 82KB]for QMUL’s privacy notice.

How long do we keep your data for?

All personal data is kept in line with QMUL’s Records Retention Policy [PDF 146KB].

What are your rights regarding your data?

Under the the UK GDPR, data subjects have certain rights over how their data is processed, including the right to know what information is processed and how.

However, a number of those rights are limited when the data is being used for research purposes, including the right to access personal data, to restrict or object to the data processing and to correct inaccurate data. This is because records need to be managed in a specific way to ensure that research is accurate and reliable.

What should you do if you have a query or concern?

If you would like to make a request relating to your personal data, you should contact QMUL’s Data Protection Officer at data-protection@qmul.ac.uk and requests will be considered on a case by case basis. 

You can refer to our QMUL’s central research privacy notice for more information, including on your rights, which can be found at Privacy Notice for Research Participants [PDF 82KB].