Medical research charities and the research agenda – a strong collective voice for change

Sally Thompson is the Association of Medical Research Charities (AMRC)’s Communications Officer. Here she blogs about the AMRC and the strong collective voice of medical research charities.

Medical research is the UK’s favourite charitable cause, with over 11 million of us giving money to medical research charities in a typical month. Charities want to fund the best research possible – so how do they go about this? And how do they influence the research agenda to make sure patients benefit as much as possible from medical research?

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Early Access to Medicines scheme

Last month the UK Government’s Department of Health announced an Early Access to Medicines Scheme. But, what is this new scheme? and what does it mean for people living with MND?

The drug trial processpipette

The only proven drug to slow progression in MND is riluzole. This is the only drug that has passed all the stages of drug testing – known as clinical trials – and has been shown to be beneficial for people living with MND. Clinical trials are the ‘gold standard’ and are put in place to ensure that a drug is safe and beneficial before it is given to patients.

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Association Receives ‘Good Practice’ Certification

Back in March I mentioned that the Association’s peer review practices were being audited by the Association of Medical Research Charities. I’m pleased to say that we’ve been given a clean bill of health and are now the proud owners of a new AMRC Certificate of Good Practice.

With increasing numbers of scientists seeking funding and an explosion of new ideas and research avenues to pursue, the process of independent and objective review by other researchers helps us to ‘separate the wheat from the chaff’, ensuring that the research we do fund is of the highest scientific quality and greatest relevance to MND. It also provides our supporters with assurance that we are using their generous donations appropriately and not being led by fashion or vested interest.

Of course, the best review processes in the world won’t guarantee that any specific project will be successful. By its very nature, research is exploring the unknown – to quote Albert Einstien: “If we knew what we were doing, it wouldn’t be called research!”  But it does give us confidence that we are heading in the right direction, towards a World free of MND.