The world has gone consultation mad. Another two dropped into my inbox yesterday. I’m seriously considering booking myself into consultation rehab. A few days off next week will at least allow me to undergo an intensive consultation detox programme in the meantime.
For those of you who have set aside today to write a response to a consultation paper here’s my top three tips: keep it short; make the questions work for you and; don’t just send your response to the reply box, share it with others!
One of the more interesting consultations to have appeared since the beginning of the year is the Office for Life Sciences’ stock-take of developments in regenerative medicine building on the work of the UK Stem Cell Initiative. As you may recall, regenerative medicine (stem cell research) is a key plank of the MRC’s strategy and delivery plan announced at the end of last year.
Interestingly, the term ‘stem cell research and charities’ is one of the phrases that most often brings people to this blog from search engines – I think the term now used widely is ’trending.’ For good reason given the news it is getting. And I thought this was reason enough to do a bit of a focus piece today.
Stem cell research is one of the most exciting avenues for research right now and, given its potential, it is no wonder that charities are increasingly involved in, if not at the forefront, of such work. I guarantee you that in any given week, a Google news search for medical research will result in several headlines about stem cell research and that at least one will have a charity component.
The hot news in the sector this week has been the British Heart Foundation’s ‘Mending Broken Hearts’ campaign to support a £50 million programme of stem cell research. You can view one of the videos from that campaign by clicking on the video screen to the right – yes, just an added reason to visit this blog again and please do suggest videos for me to include! But I was also interested that AMRC’s 126th and newest member charity ‘Restore Burn and Wound Research’ has stem cell research at the heart of its research strategy. I could, of course, have pointed to many other examples of such work being pursued by other charities.
I asked my colleague, Dr Kieran Breen (Research Director, Parkinson’s UK) to say why such research is important and here’s what he said:
‘One approach for the treatment of Parkinson’s is to replace the nerve cells that have died. Stem cells are a promising tool with which to achieve this aim. These cells can be transformed into specialised nerve cells that can then be transplanted into the brain. There are multiple sources of stem cells. They can be obtained from an embryo at a very early stage of development. Alternatively, they can be generated by reprogramming specialised cells such as skin cells. Each source has its advantages and disadvantages so it is vital that we keep all avenues open in our search for an ultimate cure for Parkinson’s.’
We did a rough search on our database here and excluding collaborative ventures, larger programme grants and capital projects (simply to get a sense of the depth rather than breadth of interest in the sectot) we identified 24 charities that funded 104 projects or fellowships involving stem cells amounting to almost £10million. Given that was up until 31st March 2010, I have no doubt we have seen a further expansion in this profile but the AMRC member charities pursuing this line of research in one way or another and who appeared in our search include the following:
|Action Medical Research|
|Alzheimer’s Research UK|
|Arthritis Research Campaign|
|Association for International Cancer Research|
|Bardhan Research and Education Trust of Rotherham Limited|
|Breakthrough Breast Cancer|
|Breast Cancer Campaign|
|British Heart Foundation|
|British Lung Foundation|
|Cancer Research UK|
|Fight for Sight (British Eye Research Foundation)|
|Guy’s & St Thomas’ Charity|
|Juvenile Diabetes Research Foundation (UK)|
|Kidney Research UK|
|Multiple Sclerosis Society|
|Parkinson’s Disease Society|
|Royal College of Surgeons of England|
|Royal National Institute for the Deaf (RNID)|
|Sir Jules Thorn Charitable Trust|
|Yorkshire Cancer Research|
I am sure there are others and apologies in advance to any members who I have missed off the list (happy to miss them).
I feel that one of the difficulties the general public probably has at the moment is in trying to untangle the flood of news stories on stem cell research and get a sense of those discoveries that are near to application with patients. A number of AMRC members like the MS Society have pages which list some of the most interesting trials. You might also try searching on the new (in beta phase) UK Clinical Trials Gateway being established by the National Institute for Health Research (NIHR). I did a very simple search this morning and it churned out 16 trials.
The fact that we have a strong and stable environment in the UK including a sound legislative framework is an important reason why UK stem cell research is prospering in this country. You only have to look at the ensuing stop/start debate in the US to understand why. It’s a crucial facet of our current environment and we must hold on to it whatever changes there might be in arms-length bodies and regulators.
You might be interested to know that AMRC is currently revising its position statement on stem cell research to bring it up-to-date. Don’t worry, we are not issuing a consultation paper, but I am always open to suggestion of how to make these things be more meaningful to the media, public and our partners.
And finally, if you’d like to read around the subject a bit more I can highly recommend the website of the UK National Stem Cell Network (UKNSCN) as a starting point. Also, don’t forget the forthcoming public engagement events on stem cell research that AMRC is doing with UKNSCN, in London on 7th March and York on 29th March. I encourage you to root around some of our member sites as well – for instance the MND Association’s research blog – where they will often post regular updates on what is happening.
I’m off to tear up a consultation paper….