Welcome to our Frequently Asked Questions (FAQ) page
This page is designed to help you find answers to common questions quickly and easily.
If you cannot find the answer you are looking for, please do not hesitate to contact us directly.
NHS Tayside and the University of Dundee are running a new diabetes care programme called iDiabetes. iDiabetes (intelligent Diabetes) will provide a precision medicine approach to give personalised care to diabetes patients. This will be achieved by better using health data that is routinely collected for patients with diabetes, and by looking at the results of additional blood tests to better predict which drug will work best, and what the individual risks are for that person.
We will compare what happens to groups of patients who have usual care, with those having iDiabetes and enhanced iDiabetesPlus care. This will tell us if patients have better outcomes with iDiabetes care and if this is cost effective for the NHS.
The iDiabetes project is in the set-up phase and we are aiming to start in May 2024.
The study will run for 2 years. Once we have the results of the study, they will be published in medical literature and we will post a summary of the findings on the study website.
If the results show that iDiabetes care has better outcomes for patients, and is cost effective for the NHS, the aim will be to roll out iDiabetes for all patients across the whole of Scotland.
GP practices in Tayside, who have agreed to take part, have been randomly put into one of three groups. You can see which group your GP practice is in here
The three groups are:
See below for more information on each group.
This group of practices are our control group. Patients at these practices will continue to receive their usual care. They will not actively participate in the study, but we will compare what happens to these patients with patients in the two iDiabetes groups.
Patients in this group will have their medical records and blood test results assessed by the iDiabetes platform. Using computer algorithms based on current treatment guidelines, recommendations for treatment will be made.
All results and recommendations will be discussed between the health care team and the patient so they can decide together what is the best treatment option. It may be that no recommendations are made, in which case patients will continue with their current care.
To view the iDiabetes Patient Information Flyer click here.
In addition to the plans for the iDiabetes group above, the Plus group will have additional blood tests at their routine visit. These will be used to give enhanced precision recommendations on treatment. They may also recommend that patients are referred for further investigations including additional blood tests, a heart scan (ECHO) or a liver scan (Fibroscan).
To view the iDiabetesPlus Patient Information Flyer click here.
Individual patients cannot ask to take part in this study. You will automatically take part if your GP practice has signed up to the study. The group you are in is determined by which group your practice has been randomly allocated to.
We are letting all patients at GP practices implementing one of the iDiabetes care groups know about the study. You do not need to do anything; the work will be completed by your GP practice.
When you attend for your routine diabetes review you will be entered into the study. If you would prefer not to take part, you can let your health care team know at your appointment or contact the iDiabetes team by phone or email here
Yes, you can do this in two ways.
iDiabetes may recommend a change in your medication or a lifestyle intervention. It may also suggest that you attend for further investigations such as a heart or liver scan. Any recommendations will be discussed with you. It is up to you and your care team to agree upon any changes you make.
It may also be that no recommendations are given. In this case you should continue with the current treatment plan you have agreed with your health care team.
If you have Type 1 diabetes you will be asked to attend for your review at your GP surgery, or local treatment centre. If your practice is an iDiabetesPlus practice, you will have 2 additional blood tubes collected at the same time as your usual annual blood samples are taken. These additional blood tests will be done to confirm that your diagnosis is correct, and if you are aged over 40 years, to investigate your heart and liver health. Once your results are available you will be given an appointment in secondary care (at a hospital clinic) to discuss your results. This will be around 6 weeks after your appointment. This is to allow time for all your results to be analysed and an appointment to be made.
You will attend for your usual annual diabetes review at your GP practice or treatment centre. If your practice is an iDiabetesPlus practice, you will have two additional blood samples taken (at the same time as your usual blood tests). After 4 weeks you will then have an appointment with your diabetes care team to discuss your diabetes and your blood results. The iDiabetes algorithms may recommend a new treatment or a further investigation, and this will be discussed with you by your diabetes care team. The iDiabetes system will continue to monitor your diabetes control and other diabetes risks and complications and let your diabetes care team know if there is any new concern or recommendation. For example, if your kidney function deteriorates, an alert will be sent to your GP suggesting that this should be reviewed.
No, you do not have to take part and you can opt out at any time without giving a reason. This will not affect your usual care. If you wish to opt out, you can let your doctor or nurse know when you attend for your diabetes review visit.
You can also contact the iDiabetes team by phone or email here. We will let your GP practice know that you do not wish to take part.
There are no payments for taking part in this study.
If you move after you have had your annual review within the study recruitment period, we will continue to offer you iDiabetes or iDiabetesPlus care, if that is what you have been receiving. We will liaise with your new GP practice.
If you move outwith the Tayside area, then you would no longer be in the study and you would resume usual diabetes care with your new GP or diabetes care team.
All the blood tests for patients in the iDiabetesPlus group are tests which are routinely undertaken within the NHS for other groups of patients, or are blood tests where there is strong evidence that they can help with clinical care decisions. The additional blood tests are:
See below for more information on each blood test.
BNP (or strictly NT-proBNP) is a blood test that measures levels of a protein called brain natriuretic peptide that is made by your heart and blood vessels. BNP levels go up when the heart cannot pump the way it should – a condition called heart failure. A result higher than 125 pg/mL is abnormal. The higher the number the more likely heart failure is present and the more severe it is.
In iDiabetes, a result between 125pg/ml and 400pg/ml will result in a recommendation to start a class of tablets called SGLT2-inhibitors which have been shown to be very beneficial for people with heart failure or at risk for heart disease. A result above 400pg/ml meets the clinical level for a diagnosis of heart failure. If your BNP result is above 400pg/ml we will organise a heart scan (Echocardiogram) and ensure you are seen by the cardiology team at the hospital.
A highly sensitive troponin I test measures the levels of Troponin I proteins in the blood. These proteins are released when the heart muscle has been damaged, such as occurs with a heart attack. The more damage there is to the heart, the greater the amount of troponin I there will be in the blood. The test is so sensitive that the increased levels can be detected with only very mild damage to the heart. We will use this test to identify people who are at high risk for heart disease, as there are two treatments that have been shown to be beneficial in people with type 2 diabetes who are at risk for heart disease. These treatments are drugs within two classes – SGLT2 inhibitors such as Empagliflozin or Dapagliflozin, and GLP-1 Receptor Agonists such as Liraglutide or Semaglutide.
This test measures the level of C-peptide in a sample of your blood and is an accurate way to find out how much insulin your body is making.
Insulin is a hormone made by your pancreas. It helps blood glucose (blood sugar) get into your cells, where it can be used for energy, and helps keep your blood glucose at healthy levels.
During the process of making insulin, your pancreas produces C-peptide. C-peptide and insulin enter your bloodstream at the same time and in equal amounts. C-peptide does not affect your blood glucose levels, but it can be helpful to measure in the blood as it tells us how well your pancreas is working. In people treated with insulin injections, we cannot measure blood insulin levels as this will tell us how much insulin you have injected rather than how much insulin your pancreas is producing.
A C-peptide test can provide important information to help understand, monitor, and/or treat disorders that involve how well your body makes insulin. This test can help us ensure that people with type 1 diabetes are correctly diagnosed (the c-peptide should be low or undetectable) and can be used to help understand why someone has developed type 2 diabetes and their risks of diabetes complications.
The Enhanced Liver Fibrosis (ELF) test is a blood test that measures three markers of liver scarring, the results of which are combined to give the ELF score. The ELF score indicates how likely it is someone has liver fibrosis or cirrhosis (names for mild or severe liver scarring). People with type 2 diabetes are at increased risk of accumulation of fat in the liver (fatty liver) which can cause liver inflammation and then scarring (fibrosis/ cirrhosis) over many years.
In iDiabetes we will automatically measure the ELF test in people whose initial liver blood tests are abnormal. If your ELF test is elevated, suggesting the possibility of liver scarring, you may be invited to have a Fibroscan (a type of ultrasound to assess the liver stiffness) to confirm if you do have liver fibrosis. If you do, you will be encouraged to lose weight (if you are overweight) and if you have type 2 diabetes, may be recommended to start on drugs that reduce liver fat such as Pioglitazone or Semaglutide.
Hepatitis B virus (HBV) and hepatitis C virus (HCV) are viral infections that can cause chronic liver damage and lead to liver scarring. Many people with these infections will have no symptoms and therefore may not know they have the disease until they have quite advanced liver scarring. It is routine to test people for these infections if they are found to have unexplained liver inflammation or liver scarring. The blood test used to look for chronic hepatitis B infection is called Hepatitis B surface antigen and the blood test used to look for chronic hepatitis C infection is called hepatitis C antibody.
In iDiabetes we will automatically test for HBV & HCV in any people found to have abnormal liver blood test results. We will not routinely test Hepatitis B surface antigen or hepatitis C antibody in those with normal liver test results. If your hepatitis B surface antigen or hepatitis C antibody test is positive you will be invited to the liver clinic for further assessment and for further blood tests to confirm the presence of HBV or HCV.
Ferritin and transferrin saturations are two blood tests which relate to how a person's body absorbs and stores iron from the food they eat. The level of ferritin and transferrin saturations can be raised for several reasons including an inherited condition called hereditary haemochromatosis. In haemochromatosis the body absorbs too much iron from food and a lot of this excess iron builds up in the liver which, over time, can lead to liver inflammation and liver scarring. It is routine to test ferritin and transferrin saturations for anyone with unexplained liver inflammation or liver scarring.
In iDiabetes we will automatically measure ferritin and transferrin saturation tests for people found to have raised liver inflammation blood tests. If your ferritin and transferrin saturation tests are found to be high, the iDiabetes team will arrange for you to have a further blood test looking for haemochromatosis genes. If these are positive you will be invited to be seen in the liver clinic for further tests and management.
We will use a genotyping array to measure ~1 million variants in the genome. These will be summed up to generate polygenic risk scores (more information below) for Coronary Artery Disease (heart disease) and risk of type 1 diabetes. We will use the CAD polygenic risk score to help us identify people at high risk for heart disease to ensure that these CVD (cardiovascular disease) risks are appropriately treated. We will use the type 1 diabetes genetic risk score to aid in making the correct diagnosis for people with a clinical diagnosis of type 1 diabetes.
No, the type of tests we are doing do not impact your insurance. We are not testing for inherited conditions so the tests will have no impact on other members of your family.
Many people have an illness, or several illnesses, which are affected by changes in either one or many of their genes, frequently coupled with environmental factors. Researchers study these changes to understand the role that genetics plays in diseases across different populations.
A “polygenic risk score” is one way by which people can learn about their risk of developing a disease, based on the total number of changes related to the disease. For example, we now know that many thousands of genetic variations are involved in risk for heart disease (coronary artery disease). It is easy for us to measure these 1000s of variations and to generate a score (a number) for each person. Most people will have an average score meaning they are at average genetic risk for heart disease, but some will have a particularly high genetic risk score and knowing this can help us make clinical decisions about what treatment people with diabetes need. Those with a high genetic risk score are at greater risk than we would expect from their clinical risk factors (e.g., blood pressure, cholesterol, body weight, smoking). We will be using this Coronary Artery Disease polygenic risk score to better predict risk of heart disease for people in the iDiabetesPlus practices.
We will also use a Type 1 diabetes polygenic risk score to help us better support the diagnosis of type 1 diabetes in people with a clinical diagnosis of type 1 diabetes.
For more information on polygenic risk scores click here
Your genetic data will be held securely in your medical record, in exactly the same way we store all of your blood test results. We will initially only use your genetics results to generate two polygenic risk scores. It is possible that we may be able to use your stored genetic results to improve your clinical care in the future. We will only do this once the iDiabetes management board, which includes people living with diabetes, and the Scientific Advisory Board have agreed that there is a clinical value in using your genetic results for this purpose. For example, other genetic risk scores may be developed that are clinically useful, or genetic markers for whether or not you will have bad side effects to a new medication could be used.
When you attend to have your review bloods taken, you will be asked if you agree to the bloods taken undergoing genetic analysis as part of the iDiabetes project and for future clinical use. If you agree, a blood sample will be taken for the genetic analysis.
If you do not agree to the genetic tests we will not take that blood sample. You can still take part in iDiabetes but we will not be able to assess your genetic risk scores.
If you do not agree to the genetic tests and decide not to take part in the study, we will opt you out completely and you will receive the usual standard care.
The study is funded by the Chief Scientist Office of the Scottish Government and the Tayside Health Fund.
Ewan Pearson, Professor of Diabetic Medicine at the University of Dundee, is leading the project. The study management group includes investigators from the Universities of Dundee and Aberdeen, NHS Tayside, NES Scotland, My Diabetes My Way and patient representatives.
This study was reviewed by an NHS Research Ethics Committee which raised no objections from the point of view of medical ethics. The study has also been approved by NHS Tayside Research and Development.
The University of Dundee is sponsoring the study. The University has a policy of professional negligence clinical trial insurance which gives legal liability cover and no-fault compensation for accidental injury. Tayside Health Board is a member of the NHS Scotland Clinical Negligence and Other Risks Insurance Scheme (CNORIS) which gives legal liability cover of NHS Tayside for this study.
Yes, patients have been actively involved in the study design and management. A Public Patient Involvement (PPI) group were regularly consulted while the study was being set up and this will continue throughout the project.
Yes. Protecting your privacy is very important.
iDiabetes complies and adheres with all the requirements of General Data Protection Regulations, the Data Protection Act 1998, and NHS Scotland Code of Practice on Protecting Patient Confidentiality.
We will need to use information from you and from your medical records for this research study.
This information will include your initials, NHS number, name and 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 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 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 you took part in the study.
It is lawful for the University/NHS Tayside to use your personal data for the purposes of the research. The legal reason for using your information is that using it is necessary for the research which is carried out in the public interest.
It is lawful for the University/NHS Tayside to use your sensitive personal data (if applicable) for the purposes of the research. The reason we use sensitive personal information such as data concerning health is that using it is necessary for scientific research purposes. Legally we must ensure we have technical and organisational processes in place to respect your rights when we use your information.
You can find out more about how we use your information at:
If you are concerned about your participation in the study, you have the right to discuss your concern with a researcher involved in conducting the study or a doctor involved in your care.
If you have a complaint about your participation in the study, first of all you should talk to a researcher involved in the study. You can also make a formal complaint. You can make a complaint to a senior member of the research team or to the Complaints Officer for NHS Tayside.
Complaints and Feedback Team, Ninewells Hospital, Dundee, DD1 9SY, Freephone 0800 027 5507, email TAY.feedback@nhs.scot
If you think you have come to harm due to taking part in the study, there are not any automatic arrangements to get financial compensation. You might have the right to make a claim for compensation. If you wish to make a claim, you should think about getting independent legal advice but you might have to pay for your legal costs.
If you wish to complain about the use of your information please email dataprotection@dundee.ac.uk or, informationgovernance.tayside@nhs.net or, you may wish to contact the Information Commissioner’s Office.