We would like to thank you and your child for taking part in the Oxy-PICU study. Our aim is to find out whether children who come to intensive care in an emergency who need both ventilation and extra oxygen have better outcomes when doctors/nurses aim for oxygen saturations at the lower end of the recommended range (88-92%), or at levels often currently used (above 94%). Both of these targets are used in standard practice at the moment, but it is not known which is better. That is why we are doing this research. Oxy-PICU is funded by the National Institute for Health Research.
Who are we?
The Intensive Care National Audit & Research Centre (ICNARC) are sponsoring and managing this study. We are based in the UK and are the data controllers for the study, responsible for looking after yours and your child’s information and using it properly..
How will we use information about your child?
We will need to use information from your child’s medical records for this research project. This information will include your child’s initials, NHS number, name and your contact details. People will use this information to do the research or to check your records to make sure that the research is being done properly.
People who do not need to know who you or your child are will not be able to see your name or contact details. Your data will have a code number instead. We will keep all information about you and your child safe and secure.
Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that your child took part in the study.
What are my choices about how my child’s information is used?
You can stop being part of the study at any time without giving a reason. We will keep information about your child that we already have. If you choose to stop taking part in the study, we would like to continue collecting information about your child’s health from your hospital. If you do not want this to happen, tell us and we will stop.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about your child.
Where can I find out more about how my child’s information is used?
You can find out more about how we use your information;
- at www.hra.nhs.uk/information-about-patients/
- by asking one of the research team
- by sending an email to OxyPICU@icnarc.org.
What will happen to the results of this study?
The results of the study will appear in scientific journals. You will be able to find the results on ICNARC’s website (www.icnarc.org) within a year after the study is completed. It will not be possible to identify any person who has taken part in the study in any journals, reports or articles.
ICNARC will keep identifiable information about you and your child for no longer than one year after the study has finished (unless you have agreed otherwise) and the rest of the research data will be kept for up to 15 years. The local NHS Trust will archive identifiable information about your child from this study for 15 years after the study has finished. All information will be stored securely. ICNARC will not receive new identifiable information about you or your child that has emerged from this study.