Information for parents and carers
About the NeoVISOR study
A national study to help improve emergency care for newborn babies with breathing difficulties.
We know this information may reach you at a very difficult time. You do not need to read it now, or do anything at all. Decisions about the information below can be made at any time in the coming weeks.
Do not want your baby's information included? Opt out at any time.
You do not need to give a reason, and it will not affect your baby's care in any way. You can:
- fill in the short opt-out form (or scan the QR code on the leaflet or poster)
- tell any member of the team caring for your baby
- email the study team: james.diviney@nhs.net
- register a National Data Opt-out at www.nhs.uk/your-nhs-data-matters
What is this study about?
Evelina London Children's Hospital is running a national study to learn more about newborn babies who have trouble breathing.
- Being in the study will not change how the doctors and nurses care for babies.
- We will only use information that doctors and nurses already record about your baby.
- If you do not want us to use your baby's data, you can say no. This page explains how.
This study is non-commercial and for NHS benefit only. Information is never shared with companies.
What are we trying to do?
Some babies with breathing problems need to go to special hospitals for extra care. Sometimes they need to be moved again to get a higher level of help, such as a treatment called ECMO. ECMO is a machine that adds oxygen to the baby's blood outside the body and then puts it back in.
We want to find out early which babies might need this extra help. That way, they can get the right care faster and avoid being moved more than once.
How will the study work?
- Babies still get normal care. After they are moved to a specialist hospital, we look at information already collected by medical staff.
- We use secure computer systems to keep the data.
- The data is linked to data held on other large NHS databases so we can learn what happened to each baby.
- The data is already routinely collected by the NHS, so we do not ask you to complete a consent form.
Read the full information sheet Download leaflets and poster
Questions?
Please speak to any member of the team caring for your baby, or contact the patient and family lead for NeoVISOR: Dr James Diviney, james.diviney@nhs.net.