AZTEC Study Privacy Notice

This notice explains how personal information relating to children who took part in AZTEC is collected, used, stored and protected.

What personal information we collect

For children recruited to AZTEC, the study may hold personal identifiers and contact details, including name, date of birth, NHS number and family contact details, together with health information where the appropriate consent and approvals apply.

Where the information comes from

Information was collected when children joined AZTEC and through subsequent follow-up. Contact details may be updated through healthcare records where permitted. Health information may also come from parents, general practitioners, hospitals, NHS datasets and neonatal research databases where approved.

Why we use the information

AZTEC uses these data to understand respiratory health, development and growth after very preterm birth and to evaluate the longer-term effects of the treatment assigned during the neonatal trial.

Our legal basis

Cardiff University processes personal data for this research under the UK GDPR legal basis of public task, for scientific research in the public interest and subject to appropriate safeguards. This legal basis is separate from research consent and duties of confidentiality.

Sharing information

Where necessary and appropriately approved, information may be shared with organisations that provide additional health information for the research. Identifiable information is shared only when needed for an approved purpose and under appropriate safeguards.

How long information is kept

The current AZTEC privacy notice states that study information is retained securely for 25 years in accordance with University policy, after which records are securely destroyed or deleted as required.

Your data-protection rights

Depending on the circumstances, data-protection rights may include access, rectification, erasure, restriction, objection and data portability. Research exemptions can affect how some rights apply. To make a request, contact the AZTEC team at aztecat1@cardiff.ac.uk.

How to raise a concern

Concerns about use of participant information can be raised with the AZTEC team. The Cardiff University Data Protection Officer can also be contacted independently at inforequest@cardiff.ac.uk.

You also have the right to complain to the Information Commissioner’s Office if you are unhappy with how personal information has been used.