Medical research should start and finish with the patient

Results of a recent poll suggest that the UK public is incredibly supportive of healthcare research within the NHS. These results will now be used as evidence that the developing Health and Social Care Bill should include statements about an obligation to fund and promote research within the NHS.

The results published today, state that a staggering 97% of people polled believe it is important for the NHS to support research into new treatments for patients and 92% believe it’s important for the NHS to support such research funded by charities.

990 adults were polled to find these figures, by one of the top polling agencies in the world, Ipsos MORI. They were commissioned by the Association of Medical Research Charities of which we are a member, Breast Cancer Campaign and the British Heart Foundation.

Commenting on the poll results, our director of research development, Dr Brian Dickie said that “The overwhelming support demonstrated in this poll indicates the importance that patients and public place on clinical research. Considerable advances are being made in understanding complex diseases such as motor neurone disease and the NHS will play a vital role in translating this new knowledge into better diagnostics and potential treatments. Medical research is no different from medical treatment in that it has to start and finish with the patient.”

 We’ve known for a long time that people affected by MND place research high on their priority list and one of our aims is to enable people with MND to participate in research should they so wish. In order for us to achieve this, we will need the right infrastructure available within the NHS to support healthcare research – studies that involve people such as clinical trials, biomarker studies etc.

We’re currently funding a number of healthcare studies within the NHS that involve people with MND altruistically giving blood samples, answering questionnaires and having brain scans to bring us closer to understanding the causes and developing new tools for a quicker diagnosis.

One study we’re currently funding is trying to identify a specific MND ‘fingerprint’, known as a biomarker to speed up the diagnosis of MND. The study is called Biomarkers in Oxford (BioMOx) and is led by Dr Martin Turner from the University of Oxford, from within the John Radcliffe Hospital in Oxford. People with MND play a crucial role in this project.

Speaking about his project, Dr Martin Turner said that: “My sort of research simply can’t be done in a different model, either in a test tube or in a culture dish. It has to be based in patients. We recognise that we are asking them to come and do things that don’t directly benefit them, we’re not giving them a treatment, but it helps us to find out more about the disease. I never cease to be humbled by how much time people with give and what they’ll have done towards our goal of finding better treatments.”

It is vital that the NHS continues to support healthcare research, and to ensure that diseases, such as MND are not forgotten.

The results from the poll are a clear indicator that healthcare research should lay at the heart of the NHS, and should be stated in the developing Health and Social Care Bill.

Making our voice heard

We will continue to make our voices heard to ensure that MND care and research can thrive in the future so that we can move closer to finding a better treatment, and speeding up the diagnosis of MND.

If you’re interested in reading more about our campaigning activities and want to get involved, then please visit our campaigns website :

Read our press release

Read the AMRCs press release

Read about Dr Martin Turner’s Biomarker study

First results from BioMOx study have been published!

We are pleased to announce that the first results from the Oxford Study for Biomarkers in MND/ALS (known as BioMOx) study have been published in the prestigious journal Neurology.

From this study, a common signature of nerve damage has been identified in the brains of people living with MND using an advanced MRI technique.

The findings demonstrate the importance of MRI in the development of a new biomarker for MND as well as being a significant stepping stone forwards toward two of our research goals – to identify disease markers, and to develop the research workforce.

MND Association’s Press Release
MND Association’s News in Research Article

Identifying disease markers
One of our research aims (set out in our research strategy 2010-2015) that we are working towards is that through our funding, we will have contributed to the identification of disease markers. By funding the BioMOx project (which is ongoing), we are already moving towards this aim.

Developing the research workforce
The BioMOx project is led by Dr Martin Turner from the University of Oxford who was awarded with the Medical Research Council (MRC)/ MND Association Lady Edith Wolfson Clinical Research Fellowship in 2008. This project is ongoing and means that we are not only funding cutting edge research, but we are also aiding Dr Martin Turner to develop his career as an MND clinician and a researcher.

As research is only as good as the researcher, it is important for us to continue to develop the UK basic research capacity by encouraging young clinicians into MND research. We currently fund four fellowships – our most recent of which was announced last month to Dr Pietro Fratta from the University of Sheffield.

Journal article reference: Filippini et al. Corpus callosum involvement is a consistent feature of amyotrophic lateral sclerosis Neurology November 2, 2010 75:1645-1652