Prof Little and the Irish Times

[PatriciaAnn]

I don't think this has been posted before - it has only just been brought to my attention. The Vasculitis Registry is mentioned and, of course, this is the one which Vasculitis UK is sponsoring over five years.

imt.ie/clinical/2012/11/lit...

[HiveMind]

Interesting. Sounds like the Irish are off the starting blocks in a big (or should that be "Little"!) way!

[Suzym2u Moderator Vasculitis UK]

This is very interesting Pat

[Derek]

Having read this paragragh from the Prof Little article where, apart from VUK fund raising does any other funding come from? What is being/can be done to get similar funding?

(All the foundation work Prof Little did in the UK with Richard Watts and others setting up UKVAS, a multi-centre vasculitis registry, will not be lost. “The irony is that while that UK group is well established and actively recruiting, the Irish one is already ahead after only three months, because it is very well resourced here at the level of sample collection — thanks to SFI, it’s all in place now here, whereas in the UK we don’t have sufficient funding to get to that stage yet.”)

[PatriciaAnn in reply to Derek]

Hi Derek. I'm not quite sure if this answers the points you raise. Prof Little was fortunate in obtaining the PIYRA Award (Science Foundation Ireland) of which a quarter was to go towards the Registry - see V-UK Newsletter Spring 2012 (vasculitis.org.uk/about/new... page 12.

Funding generally for reseach etc comes from various places depending on what it is. Some is funded by drug companies, the Wellcome Trust funds research, the government/department of health, and other organisations also fund research, as do other charities such as V-UK. In most cases where V-UK offers funding it is part-funding as in most cases we are talking £hundred of thousands.

Hope that is the sort of thing you were meaning.

Best wishes, PatriciaAnn (Treasurer V-UK)

[John_Mills Volunteer in reply to PatriciaAnn]

Hi Derek, just to put it in perspective, the population & resources in Eire are small compared to the UK. Mark is a big fish in that relatively small pond. There is a lot of vasculitis research taking place throughout the UK funded by various bodies & organisations - the Wellcome Trust, as Pat has mentioned, NIHRA & MRC as well as charities like Vuk & especially Arthritis UK. Many of the drug companies like GSK & Roche carry out developmental research and support clinical trials, but of course these trials have to be seen to be independant & unbiased.

Much more research takes place in Europe, the US and elsewhere - as I found out at the International Vasculitis conference in Paris last year, there are 100s of individual pieces of vasculitis research taking place worldwide. (It will be in London in 2015!).

The reason that it was difficult to get funding for the Vasculitis Registry is because research funders usually expect a tangible end point and defined results. A comprehensive database like the Vasculitis Registry will undoubtedly produce great benefits, but these cannot be predicted. Vuk is not bound by these rules, so we are providing the basic funding for the first 5 years, after which it is expected it will be self-funded by researchers buying the anonymised data.

The main stumbling blocks for the registry are not about finance, but getting everyone to agree the protocols & issues over how much detailed individual data should be collected, "ownership" & access to the data - as well as IT issues over incompatible data systems and retrospective addition of data. The registry is actively running & accumulating data, but 2 of the biggest centres in the UK (no names!) are not yet signed up!!

BW - John