Major type 1 diabetes survey to tackle ‘unanswered questions’ about condition

People with type 1 diabetes, their families, carers and healthcare professionals involved in their care have been urged to take part in a new survey which will shape future research and help improve the management of the condition.

The short online survey aims to identify the ‘unanswered questions’ in type 1 diabetes so that academics can prioritise the most important areas of research.

It is the latest Priority Setting Partnership (PSP) from the James Lind Alliance (JLA), an organisation which brings patients, carers and clinicians together to agree which ‘evidence uncertainties’ in health care matter most and deserve priority attention.

In 2011, a type 1 diabetes PSP saw the publication of a list of research priorities. Since then however, the treatment landscape has changed significantly, with advances in medical technologies to monitor blood glucose and deliver insulin, and an increase in the number of people being diagnosed with type 1 diabetes.

This led to the creation of the ‘refresh’ PSP which will re-evaluate the priorities of the diabetes community and those involved in their care, to ensure that priorities are current and are representative of the needs of all involved in type 1 diabetes.

The team behind the project are calling on patients, clinicians, and carers to complete the survey so they have their say on future research priorities.

Project lead a clinical fellow in Diabetes Technology and Endocrinology in Addenbrooke’s Hospital, Cambridge, said: “The purpose of the JLA is to ensure the shared interests of patients, carers and clinicians are considered when areas of research are identified to ensure all the important questions are answered.

“It also aims to address the mismatch between what researchers want to research, and the practical information that is needed day-to-day by patients and health professionals.

“We aim to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them.”

Once the PSP has collated the results and prioritised a list of unanswered questions, the results are taken to research commissioning bodies to be considered for funding.

Michael Skarlatos, a Senior Diabetes Specialist Dietitian and Education and Research Associate at Leicester Diabetes Centre, is part of the PSP steering group.

He said: “Our mission is to actively engage patients, carers, and clinicians in identifying and prioritising the crucial unanswered questions regarding type 1 diabetes.

“By collectively determining the most significant research areas that require attention, we ensure that future projects are aligned with the needs and perspectives of those directly affected.

“This inclusive approach empowers us to shape the course of research, ultimately driving advancements that truly address the pressing concerns of patients, carers, and healthcare professionals alike.”

The National Institute for Health and Care Research (NIHR) funds the infrastructure of the James Lind Alliance (JLA) to oversee the processes for Priority Setting Partnerships (PSPs).

Complete the survey here.

Find out more about the Priority Setting Partnership here.

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