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20,000 volunteers milestone achieved for essential Scottish diabetes research – but more needed
7th December 2023
A vital register giving all patients with diabetes living in Scotland an opportunity to be contacted about taking part in research projects has hit the 20,000 volunteers mark
This significant milestone for the NHS Research Scotland (NRS) Diabetes Research Register means that a large and diverse range of people across the country can now be assessed for their eligibility to take part in different diabetes research projects.
Once identified, registrants can be directly contacted by diabetes research teams who will provide information on the research study and ask if they are interested in taking part.
Last year, almost 340,000 people in Scotland (6.2% of the population) had diagnosed diabetes: 88% had type 2, around 10% had type 1, and 2% were categorised as ‘other’.
However, diabetes care has been revolutionised by research and that will continue if much-needed volunteers keep coming forward. Important studies have underpinned the development of medications and technologies to help people with diabetes manage their condition and avoid long-term complications.
NRS Diabetes Network Research Register Manager, John Kerr said: “NRS Diabetes’ ability to rapidly and accurately identify a larger number of potentially eligible subjects from a diverse pool of 20,000 people means that essential diabetes research in Scotland can happen more quickly than ever.
“Ultimately, this means that NHS Scotland can continue to improve care, and speed up progress towards new treatments for people with, or at risk of, diabetes. Certainly, while more research is required, pre-diabetes and diagnosed type 2 diabetes can, for some people, be reversed by lifestyle changes such as increasing exercise and improved diet.
“The growing prevalence of the condition, and its related complications, means significant costs to society as people take time off work through diabetes-related illness and retire early – but that growth across Scotland should not be considered inevitable.”
The Diabetes Research Register allows people living with diabetes in Scotland to give their permission to be matched to and contacted about taking part in important studies.
When a person with diabetes gives their permission to join the Register, NRS Diabetes can use SCI-Diabetes – NHS Scotland’s electronic patient record for diabetes – to record their interest.
NRS Diabetes can then in turn use SCI-Diabetes to search and identify people who may be a good match for a study, allowing research teams to make direct contact and ask them if they are interested in participating.
People with diabetes, who live in Scotland, can join the Register by email or by completing a registration form.
John continued: “We have worked hard to make sure we are able to give as many people as possible the opportunity to join the NRS Diabetes Research Register.
“Hitting 20,000 represents a fantastic milestone for both patients with diabetes and researchers in Scotland.
“It is a testament to all those involved in meaningfully showing their support for a patient-centred research culture in Scotland where access to, and participation in, research is as easy as possible for everyone.
“Indeed, finding new ways of developing effective treatments, improving care, and hopefully one day preventing diabetes and diabetes-related complications, will only be achieved through hard work and the goodwill of people who are willing to take part in research.”
John added: “Nevertheless, we are always looking for a more comprehensive and diverse spectrum of potential participants at any given time and are constantly reaching out to encourage more volunteers.
“Despite key advancements, many thousands of people with diabetes still die prematurely or are diagnosed with life-changing complications that could have been prevented. Cardiovascular disease, including heart attack and stroke, remains one of the leading causes of death in people with type 2 diabetes.
“It is therefore vital that we continue to support and advance research that will ultimately help people with, or at risk of, diabetes live better and longer lives – and so more volunteers need to continue to sign up.”
The ambition of NRS Diabetes is to approach nearly everyone in Scotland who has diabetes with the opportunity to sign up to the Register and continue to offer this approach as new people are diagnosed.
If more people join, the Register will increasingly reflect a rich and varied diabetes population that captures unique medical histories and demographics, in turn more effectively supporting the often-challenging process of finding suitable participants and ensuring that diabetes-related research can be completed successfully.
Further data can be found in the Scottish Diabetes Survey 2022 while patient education resources are available through My Diabetes My Way.
