Clearing the path to the cure for type 1

Posted on June 12, 2013 by

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Sarah Johnson, Director of Policy and Communications at JDRF, looks at the role of the UK in the international drive to cure, treat and prevent type 1 diabetes.

For 40 years, JDRF has been at the cutting edge of international type 1 diabetes research, working with academia, governments and industry to drive the science that will improve treatment of, and eventually prevent and cure type 1 diabetes. Today we launch a report in Parliament outlining challenges that need urgently addressing to keep the UK at the cutting edge of type 1 research.

Background

Research progress in type 1 diabetes has never been faster than it is today, with more progress in the past five years than the previous 50.  UK researchers have played a role at the heart of this progress, consistently winning millions of pounds of JDRF funding in open international competition each year.

In many ways our research infrastructure is the envy of European colleagues, but issues are impeding the progress of translating promising research into clinical application.

This is illustrated by a JDRF analysis of NIHR Diabetes Research Network data, which indicates that less than three per cent of people with type 1 are currently taking part in a trial, in comparison to 15 to 20% of cancer patients.

Our survey of more than 800 people with type 1 revealed that 77% have never been given the opportunity to get involved with research by their clinical team, and 72% had not even once been told about medical research.

Overwhelmingly, 96% of those denied the opportunity said that they would be interested in taking part in a clinical trial.

As type 1 research increasingly moves from bench to nearing bedside, we fear that the UK risks losing its place at the cutting edge of type 1 research if certain challenges are not urgently addressed.

Why is type 1 research important?

Type 1 diabetes is an autoimmune condition that affects about 400,000 people in the UK, and costs our economy about £2 billion each year.  Because it’s increasing by 4% each year, these costs are set to grow, with estimates setting the cost at over £4 billion per year by 2036.  Type 1 is not connected to lifestyle factors, and only research will find the cure.

As governments around the world have grasped, investment in type 1 diabetes brings benefits which extend past the immediate benefit to the millions living with type 1 around the world.  It is the best understood of all of the autoimmune conditions, which together affect an estimated three million people in the UK.  Progress in type 1 will inform research into coeliac disease, Crohn’s, rheumatoid arthritis and multiple sclerosis, to name a few.

Furthermore, over two thirds of JDRF’s research programme is also applicable to type 2 diabetes, making a staggering six million people in the UK who may be positively affected by investment in type 1 diabetes research.

What are the challenges?

JDRF established a Type 1 Diabetes Research Roadmap project, bringing together many of the UK’s leading researchers and key opinion leaders in the field of type 1 research, and their counterparts in Europe. They identified 13 research strategies  to help plug the existing gaps in the UK’s type 1 research portfolio and alleviate issues surrounding clinical trials, European collaboration and access to resources. Check out our interactive roadmap here. 

What became clear from the process of developing the Roadmap is the excitement about the possibilities to improve life with type 1 that are emerging, and the desire of the UK type 1 research community to be at the forefront of these developments.

But to remain competitive in this area certain issues need to be addressed:

  • We need more clinician scientists, and the removal of the structural barriers that preventing more talented people from choosing this career path
  • We need to get rid of unintended regulatory barriers: clinical trials regulation in the UK and Europe came up time and again in the roundtables, so this issue needs urgent government attention. We have also highlighted a particular issue with the Human Tissue Act that is preventing collection of pancreatic tissue for research.
  • Clinical trial design and recruitment also came up as areas of concern repeatedly in the roundtables, as highlighted in our survey and data analysis. So this one is a challenge to funders (not just government funders), clinicians and researchers alike.
  • We need to address barriers to collaboration. Many of the participants in the roundtables wanted more opportunities to collaborate, particularly with colleagues in other countries, but the structure of many funding calls makes adventurous collaborations very hard to pull off. This is a particular challenge to statutory research funders, and the European Union, as they are best placed to undertake major long term research infrastructure initiatives.

Resolving these challenges will transform the ability of UK researchers to improve lives, not just in type 1, but in all medical conditions with research at the point of translation to clinical use.

What next?

We’re launching the Research Roadmap in Parliament today where Paul Uppal MP, Personal Private Secretary to David Willetts, Minister for Universities and Science, will be giving the Government response, and we’ll be following up on his comments with BIS, through our own meetings, and via our 700 strong group of amazing campaigners, the T1 Youth Ambassadors.

We’ll also be promoting the Roadmap to researchers and other funders, and working to encourage others to get involved with research to find the cure for type 1 diabetes.

Posted in: Policy