Call for more participation in type 1 diabetes clinical trials

by Barbara Hewitt on June 11, 2013

Call for more participation in type 1 diabetes clinical trials

Call for more participation in type 1 diabetes clinical trials

A leading diabetes charity is calling for the medical world to do more to tell people with type 1 diabetes how they can contribute to finding a cure by taking part in clinical trials. JDRF believes that people are being denied the opportunity to join clinical trials to help find the cure for the condition and says that almost three quarters having never been informed about medical research at all by their clinical team.

The charity surveyed more than 800 UK residents with type 1 diabetes and found that 77% have never been given the opportunity by their clinical team to take part in a study to improve medical understanding of the condition. This is despite an overwhelming 96% of those denied the opportunity stating they would be potentially willing to take part in a clinical trial. Furthermore, 72% of those with type 1 diabetes said they had had not even once been told about medical research by their clinical team, the research also found.

JDRF analysis estimates that less than 3% of those living with type 1 diabetes are currently taking part in a trial despite pledges to put medical research at the heart of the changing National Health Service. The authorities have also pledged to recognise clinical trials as the lynchpin of the process of developing better treatment, and cures, for diseases and life-threatening chronic conditions such as type 1 diabetes.

Quote from DiabetesForum.com : “Only one in ten are studying prevention while almost two thirds focus on drug therapy.”

The charity said that type 1 diabetes affects an estimated 400,000 people in the UK and is on the increase, especially in children aged under five, at a rate of 5% each year making the need to support research into the condition more urgent than ever. Type 1 diabetes cannot be prevented by adopting a healthy diet or lifestyle, and those diagnosed require insulin via injections or a pump every day, for the rest of their lives, simply to stay alive.

‘Until just nine decades ago when insulin was discovered, every single person who developed type 1 diabetes died in a number of weeks or months. It is time now to push on towards finding the cure,’ said Karen Addington, chief executive officer of JDRF. ‘But this lack of clinical trial opportunities for those living with type 1 diabetes is a huge obstacle on the path to curing this condition. Government must work with researchers, funders and patient groups to implement the recommendations that will allow the NHS to meet the ambition of putting research and innovation at its heart,’ she added.

Professor Desmond Johnston, director of the UK Diabetes Research Network, said he is disappointed that so few people with type 1 diabetes are currently enjoying access to clinical trials. ‘Great strides are being made in terms of clinical trials participation levels for other conditions. I would strongly urge clinicians and patients to investigate actively participation in type 1 diabetes trials,’ he said.

Simon Denegri chairman of INVOLVE, which supports active public involvement in NHS, public health and social care research, also expressed disappointment. ‘JDRF’s report highlights that many people with type 1 diabetes would be willing to take part in clinical research if only they were asked so it is disappointing that very few are. The fact is we will only advance medical research into diabetes with the help of patients and their families. And that can only happen if clinical teams are discussing with patients the clinical trials and studies open to them as part of routine practice,’ he explained.


The opinions expressed in this article do not necessarily reflect the views of the DiabetesForum.com Community and should not be interpreted as medical advice. Please see your doctor before making any changes to your diabetes management plan.

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