Ethnic variations in birth outcomes and infant deaths in England and Wales, 2006-2012

Information for parents and the public

This page is intended to provide information for parents whose information may be used for a study of ethnic variations in birth outcomes and infant deaths in England and Wales.

Further information about the study is available on the project page and study pages.

What is the study about?

Babies in some ethnic groups are more likely to be born early (premature), to have more health problems than white babies and – although the numbers are very small – some are more likely to die from particular conditions.

The purpose of this study is to find out more about which groups of babies are most likely to be born early or to have particular health problems and die as a consequence. The aim is to identify ways to improve the health of babies, perhaps by improving the antenatal or postnatal care provided to the mothers of babies who are most likely to be affected.

What information is being used for this study?

The study will use information that is collected by the Office for National Statistics and the NHS:

• when births and baby deaths are registered;
• when babies are given an NHS number.

We will use only non-identifiable (anonymous) information about each parent and their baby. This information will include, for example information about the mother's age and ethnic group. We will NOT have any access to personal information such as names, addresses, postcodes of dates of birth or any other information that could be used to identify individuals.

Which babies are included in the study?

Information about all babies born alive in England and Wales between 2006 and 2012 will be included in the study. Twins and triplets (and other 'multiple' births) are not included.

Are parents being asked for permission to be included?

Over 700,000 women have a baby in England and Wales each year and the study will include information about five million babies. It is therefore not possible for us to ask all parents if we can use their information and that of their baby.

For this reason we have applied through the Confidentiality Advisory Group at the Health Research Authority for special permission to enable us to use birth records without the permission of parents. We have also obtained approval for the research from the South Central Research Ethics Committee (Ref:15/SC/0493).

Can I opt out of my baby being included in the study?

It is not possible for us to remove the information about any particular parents and babies from the anonymised data we will received from the Office for National Statistics. This is because we do not have any information which would enable us to identify individual parents and babies so we have no way of removing the information about particular babies from the study.

Who is carrying out the study?

The study is being carried out by researchers in the National Perinatal Epidemiology Unit (NPEU) at the University of Oxford.

The Chief Investigator is Associate Professor Jennifer Hollowell

The Information Guardian is Professor Jenny Kurinczuk

The study is funded by the Department of Health Policy Research Programme

I have a question about the study – who can I contact?

You can email health-inequalities@npeu.ox.ac.uk.