INGR1D2 - INvestigating Genetic Risk for type 1 Diabetes (2) - is an important study that aims to identify children with genetic markers that put them at increased risk of developing type 1 diabetes. All maternity units in the North East North Cumbria, and several maternity units in the East of England (including Cambridge), are offering parents the chance to involve their babies in this important study. To date, over 30,000 babies in the UK have contributed this study which is looking at how we might prevent type 1 diabetes in the future. Click here to find out if your maternity unit is taking part.
The INGR1D2 study is part of a programme of research led by the Global Platform for the Prevention of Auto Immune Disease (GPPAD). This platform supports expert researchers to work together with the aim of eradicating Type 1 Diabetes completely.
Please click the video below to find out more about INGR1D2 and see what it involves.
Type 1 diabetes affects 1 in every 250 children born in the UK every year. Type 1 diabetes is a lifelong condition that causes glucose levels in the blood to become too high. People with Type 1 diabetes have to take insulin every day to manage their condition which can be very disruptive and challenging, especially for children and young people. Having Type 1 diabetes can also increase the risks of a person developing other medical conditions. See the video below for more insight into what Type 1 Diabetes is and how it impacts children.
By screening newborns to identify those at higher risk of developing Type 1 Diabetes, the INGR1D2 study offers their parents the chance to get involved in further research aimed at reducing the chance of their baby developing the condition or delaying its onset. It also means parents and children can learn more about the early signs and symptoms of Type 1 Diabetes.
Normally our immune system works to protect us from disease. In Type 1 diabetes, however, the body's immune system responds wrongly to the insulin producing cells (called "beta cells") in the pancreas and destroys them. This affects the production of insulin, the hormone that regulates levels of glucose in the blood. This then leads to the onset of Type 1 Diabetes.
Research has shown us that some people have genes that make it more likely that they will develop Type 1 Diabetes. This does not mean that they have Type 1 Diabetes, just that it is more likely they will develop the condition compared with people who don't have these genes. Research also suggests that factors in our environment can trigger the onset of Type 1 Diabetes in those with higher risk genes. These factors include viruses, bacteria in the gut (the gut microbiome), and diet. See here for more information about Type 1 Diabetes and genetic risk. More in-depth scientific information can be found in this research paper.
The aim of the INGR1D2 study is to identify babies who have a higher risk risk of developing Type 1 Diabetes. This gives us the chance to offer parents of these babies the opportunity to take part in research studies testing ways to prevent or delay the onset of Type 1 Diabetes (for example, by offering vaccines that might prevent babies from catching viruses that might trigger the onset of Type 1 Diabetes).
Infants who take part in the INGR1D2 study are genetically tested using blood spots which are collected by the NHS as part of the newborn blood spot test (the 'heel prick' test) taken a few days after birth. This means no additional blood sample needs to be taken. Please ask your midwife about the blood spot test if you would like to know more about it. Babies identified as having the genes that make them more likely to develop Type 1 diabetes are offered the option to take part in a Type 1 Diabetes prevention research study called AVANT1A (see this page for more information about AVANT1A).
There are eligibility criteria that must be met before a baby can take part in INGR1D2 (see below for details). Click here to find answers to some of the most frequently asked questions about INGR1D2. More detailed information on what the study involves can be found on the INGR1D2 Participant Information Sheet .
You are eligible for your baby to take part in the INGR1D2 study if:
You are over 18 weeks of pregnancy
You plan for your baby/babies to have the ‘newborn blood spot test’ when they are five days old in one of the participating regions
You are having your baby at one of the participating sites (see here for information about hospitals taking part in this study)
You know whether either (biological) parent has diabetes and the type of diabetes (type 1 or type 2)
You are able to understand the written and verbal English language
If you are unsure if you are eligible and would like to speak to a member of the INGR1D2 research team, then click here to find contact details for your area.
You may be asked about the INGR1D2 study during your pregnancy or on the postnatal ward if you are booked at a participating hospital. A member of our research team will provide information and answer all of your questions before you decide if you would like to take part. If you would like to let us know that you are interested in taking part, please contact a research midwife at your hospital, and they will be happy to give you further information. All the contact details for hospitals taking part in the INGR1D2 study can be found here.
We ask all parents who are taking part in INGR1D2 to complete a survey telling us about their experience of the research. Please see below to see what parents are saying about taking part in the INGR1D2 research study.