Our contact details
Name: AZTEC Team
Address: Department of Child Health, Cardiff University, Cardiff
The type of personal information we collect:
For babies recruited to the AZTEC trial, we collect and process the following information:
• Personal identifiers and contact details (for example, baby’s name, date of birth, NHS number and contact details)
• Health details of babies recruited to AZTEC if the parents have given their consent.
How we get the personal information
• We obtained the details when the baby was recruited to the AZTEC study. We update these details from the GP before mailing a questionnaire to the baby’s parents.
• We also receive the baby’s health details from the parents, GPs, local hospitals, NHS England and from the Neonatal Database Analyses Unit at Imperial.
The reason why we collect data:
• The reason why we collect the data is to find out about the babies’ breathing and development at one and two years of corrected age.
• The main data is collected directly from the parents who kindly complete the questionnaires we send to them.
How do we use the information:
We will use the information to find out the effects of the treatment that was used at birth on the baby’s breathing, development and growth.
We may share this information with other organisations e.g. NHS England if we need to obtain additional data for your baby. If the data is shared with any other organisations to obtain additional data, then identifiable data such as baby’s name, address may be shared.
Under the UK General Data Protection Regulation (UK GDPR), the lawful bases we rely on for processing this information is: public task.
Under Data Protection law, Cardiff University is required to specify the legal basis we are relying on to process your personal data.
Cardiff University is a public research institution established by Royal charter to advance knowledge and education through its teaching and research activities. As such, personal data is processed on the basis that doing so is necessary for our public task, is for scientific and historical research purposes which are in the public interest, and is subject to necessary safeguards.
Note that the legal basis on which your personal data is processed under data protection law is separate from ethical consent requirements and any common law duty of confidentiality that may apply. The parents consent for babies recruited to the AZTEC study. You are able to remove your consent at any time. You can do this by contacting us at firstname.lastname@example.org.
Research in the University is governed by policies and procedures and all research involving human participants undergoes ethical scrutiny to ensure that the research is conducted in a manner that protects participants. For more information see our Integrity and Ethics pages.
How we store your personal information
Your information is securely stored in Cardiff University’s secure computers.
We keep the baby’s information for 25 years as required by the University policy. We will then delete your baby’s information by deleting all their data from all computers and securely shredding all paper copies of your baby’s records.
Your data protection rights
Under data protection law, you have rights including:
Your right of access – You have the right to ask us for copies of your baby’s personal information.
Your right to rectification – You have the right to ask us to rectify your baby’s personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
Your right to erasure – You have the right to ask us to erase your baby’s personal information in certain circumstances.
Your right to restriction of processing – You have the right to ask us to restrict the processing of your baby’s personal information in certain circumstances.
Your right to object to processing – You have the the right to object to the processing of your baby’s personal information in certain circumstances.
Your right to data portability – You have the right to ask that we transfer your baby’s personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.
Please contact us at email@example.com if you wish to make a request.
How to complain
If you have any concerns about our use of your baby’s personal information, you can make a complaint to us at firstname.lastname@example.org.
If you wish to speak to someone independent to the study team, you can contact the University Data Protection Officer, by email: email@example.com, or in writing to:
Data Protection Officer
Compliance and Risk, University Secretary’s Office
30-36 Newport Road
You can also complain to the ICO if you are unhappy with how we have used your data.
The ICO’s address:
Information Commissioner’s Office
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk