Research of rare quality

The Government’s Office for the Strategic Co-ordination of Health Research (OSCHR) will at some point in the next few months publish its ‘National Ambitions’ for health research.  Since communications has never been one of OSCHR’s strengths it has been close to impossible to discern quite what this thing will look like, if and when it emerges.

One of the worries that I have about the ‘National Ambitions’ project – as do many of my members who support research into less common conditions –  is the degree to which they will encompass research into rare diseases.  The issue is less about seeing the name of disease ‘x’ on a page in a report which may or may not sit on a Whitehall shelf.  Rather, it’s the degree to which the report and the messages it conveys, encourages the capacity and capability for such work to continue.   

Patients with a rare disease generally get a poor deal in the UK whether it’s services and support, or research into their needs.  And perhaps it is a little unfair if unrealistic to expect OSCHR to remedy overnight what has been a systemic issue for many years.   But we do, on the other hand, have every right to expect OSCHR to ensure that the balance of research undertaken in this country reflects the needs of the wider population.  Of course, ‘how’ to achieve this balance is  another question.

Two weeks ago I was invited to sit on the Joint Selection Committee for the Medical Research Charities Group (MRCG) and Health Research Board of Ireland joint funding scheme.  This scheme was set up in 2006 and provides a stream of Government funding (about £1 million euros) to support research projects that charities have already agreed to part-fund themselves.  Researchers and institutions whose applications to the scheme are successful get the rest of the money from the Government. 

It has been a highly successful initiative which has enabled many ideas to get off the ground that may have struggled otherwise because of lack of money.  And, while open to charities large and small, it has proved highly attractive to those working in rare disease areas in particular.  For perspective you might be interested to know that there are just over 30 members of the Irish MRCG with a total research expenditure of about 10 million euros I believe.

I returned from Dublin that night feeling enthused by what I had seen and wondering excitedly whether a similar scheme could be got off the ground in the UK but explicitly targeted at rare diseases.  It will have its pros and cons and should not be seen as a complete solution to the problem.  But it might be one way of helping to ensure what I referred to earlier as ‘balance.’

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