Charity research makes a difference

Date: Wed 5th July 2017

On average it takes 17 years for an idea for a medical product to be developed, tested in studies and trials, and become publicly available. Charities have an important role in supporting medical research that leads to breakthroughs, and ultimately licensed treatments.

Medical research charities such as SRUK are committed to funding research that positively impacts people with diseases or health conditions. In many cases, such as ours, this funding is made possible through donations from the public – you, our supporters. We are currently in the process of producing an report to inform you of how your money has been spent over the past 30 years (through the Raynaud's and Scleroderma Association, Scleroderma Society and SRUK) and the impact it has had and is having. The SRUK report is due to be published in the Autumn.

AMRC report on charity investment in research

The Association of Medical Research Charities (AMRC) has just published a report on how charity research is making a difference. It analyses data from 5,287 research awards funded in five areas:

  • Generating new knowledge.
  • Translating ideas into new products and services
  • Influencing government policy
  • Developing researchers
  • Stimulating further funding and partnerships

These grants were awarded by 40 AMRC members and the data have been taken from the researchfish system. Grant holders are required to put information into researchfish relating to each grant including results, further funding, developments such as treatments, and publications – not just during the grant period but after its completion as well. As a new AMRC member, we now have access to researchfish, which will improve our ability to track the outcomes of our research in future. Access to researchfish is free for us thanks to the AMRC's collaboration with the Medical Research Council and Researchfish Ltd.

The AMRC report has confirmed that charity-funded research benefits patients in a variety of ways, from publishing work that informs researchers across the globe about new targets for treatment development to instigating guidance that will improve patient safety.

How this relates to our work

We at SRUK invest in research that provides new knowledge about scleroderma and Raynaud's, as this work improves our understanding of how the conditions develop and leads to the identification of possible therapeutic targets. These grants result in publications, which allow knowledge to be widely shared among the research community, helping progress it and move it in new directions. Work we have supported has led to the use of a number of tests being used in practice to diagnose and monitor Raynaud's and scleroderma, the validation of a number of tools, and the testing of novel drugs and treatments.

Many applications involve researchers from multiple institutions, fostering collaborations and partnerships, and enabling people with the best skills to apply and share their knowledge. For example, SRUK and the Raynaud's and Scleroderma Association have been supporting the collaborative pulmonary disease in systemic sclerosis project at the Royal Free Hospital and Royal Brompton Hospital for more than a decade. This project has led to the identification of genes and proteins that are regulated differently in people with scleroderma, leading to the identification of treatment targets.

Fellowships and PhD awards have enabled a number of researchers to develop their careers in Raynaud's and scleroderma research. For example, in 2009 John Pauling was awarded the Dando fellowship, which enabled him to carry out research evaluating the potential contribution of platelets to microvascular dysfunction in primary Raynaud's phenomenon and systemic sclerosis. This developed his interest in outcome measures in scleroderma research, particularly in relation to peripheral microvascular dysfunction in scleroderma.

As our research budget is limited, we generally fund small pilot studies. These studies generate results that enable researchers to apply to other organisations for further funding for larger clinical studies. For example, we recently funded a study by Manchester University on the use of novel agents to break down hard lumps, termed calcinosis, that form under the skin of people with scleroderma, often at pressure points such as joints). Following excellent preliminary results, the team is applying for additional funding to test these agents in the hope of developing these agents into new treatments.

With your help, we can continue to invest in research that will make a considerable difference to the lives of people with scleroderma and Raynaud's.