GDPR Notice for Group 1 Babies

Study title: Breathing Together

IRAS number: 199053

Imperial College London is the sponsor for this study based in the United Kingdom. We will be using information provided by you and also information from your child’s medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your child’s information and using it properly. Imperial College London will keep identifiable information about you for one year after the study has finished.

Your rights to access, change or move your child’s information are limited, as we need to manage your child’s information in specific ways in order for the research to be reliable and accurate. If you withdraw your child from the study, we will keep the information about your child that we have already obtained. To safeguard your child’s rights, we will use the minimum personally-identifiable information possible.

You can find out more about how we use your information by contacting:

Central Study Manager:

Dr Mindy Gore, Imperial College London, or 020 7594 6857

Chief Investigator:

Professor Andrew Bush, Imperial College, London, 020 7351 8232

Your local NHS site will collect information from you and/or your child’s medical records for this research study in accordance with our instructions.

Your local NHS site will use your/your child’s name, NHS number and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your child’s care, and to oversee the quality of the study. Individuals from Imperial College London and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Your local NHS site will pass your email address or mobile phone number to Imperial College London. The only people in Imperial College London who will have access to information that identifies you will be people who need to contact you to send the monthly questionnaire or audit the data collection process. The people who analyse the information will not be able to identify you or your child and will not be able to find out your or your child’s name, NHS number or contact details.

Your local NHS site will keep identifiable information about you and your child from this study for one year after the study has finished. 

When you agree for your child to take part in a research study, the information about your child’s health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

This information will not identify you or your child and will not be combined with other information in a way that could identify you or your child. The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your child’s care. It will not be used to make decisions about future services available to you or your child, such as insurance.