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Pregnant woman doing a finger prick blood sugar test for diabetes.

Women, their families, and healthcare professionals are invited to help prioritise research that will benefit women and families affected by diabetes and pregnancy.

Diabetes affects around 38,000 women giving birth in the UK (5%) and rates are increasing. Although most women have healthy babies, diabetes can increase the risk of complications such as pre-term birth, and long-term risks such as cardiovascular disease in mothers and babies.

However, many women report a lack of information relating to diabetes and pregnancy, and many questions remain unanswered by research. A new project, led by the University of Oxford, will identify the areas of research that are most important to the people concerned by diabetes before, during and after pregnancy. 

Project co-lead, Dr Goher Ayman, from the National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, said ‘More research is needed to help provide the best healthcare for women with or at risk of diabetes, who are planning pregnancy or are pregnant.

‘We want to work with women, their support networks, and healthcare professionals to identify uncertainties about the prevention, diagnosis, treatment, and health impacts of pregnancy with diabetes of any type. We are currently inviting people to tell us their questions about diabetes and pregnancy by completing our survey. Their questions will be used to produce a shortlist of priority research topics.’

The project will follow an established process developed by the James Lind Alliance, an initiative that aims to help direct research funding towards the issues that matter most to patients and clinicians.

Over about 18 months, the project team will work with women, their families and healthcare professionals to identify where little is known, or where there are uncertainties about, healthcare and wellbeing in diabetes and pregnancy. Those involved will agree a top ten list of priority research questions which will be shared with funders of health research. 

Karen Addington, UK Chief Executive of the type 1 diabetes charity JDRF, said ‘This is a superb opportunity for women living with type 1 diabetes to help shape diabetes research, via their own insights and experiences. We need the outcomes that matter to them to be increasingly at the heart of research design.’

Sonya Carnell was diagnosed with type 2 diabetes after the birth of her first child and had diabetes during her second pregnancy. She said ‘Despite having a family history of diabetes, I wasn’t aware of the risks relating to diabetes and pregnancy. Once I had been diagnosed, I read a lot about it and asked lots of questions, but I still found that there was a lack of information. I hope that by involving those with direct experience of the issue, this project will help to direct funding to the unanswered questions that affect me and many other women.’

To find out more or participate in the project, please visit the NPEU website. The project team are looking for input from those affected by all types of diabetes, including pregnancy with pre-existing diabetes, and gestational diabetes which develops during pregnancy.

The project is funded by the University of Oxford John Fell Fund, the Nuffield Department of Population Health, and the Diabetes Research & Wellness Foundation. Project partners are: the Diabetes Research & Wellness Foundation, Diabetes UK, the James Lind Alliance, JDRF the type 1 diabetes charity, the Oxford Biomedical Research Centre, and the Oxford Centre for Diabetes, Endocrinology and Metabolism.