We’d like to understand your thoughts on access to re... - NRAS
We’d like to understand your thoughts on access to research whether this is a fully randomised placebo controlled trial or a local clinical study. Select the option that best represents your feelings.
This is a difficult one to answer as I could have ticked three answers here: I would like the option of entering a trial, my rheumatology unit is not involved in any research that I know about AND I have never been asked about participating in research. Since the first question is the most important to me, I ticked that, but you could be losing a lot of data because everyone who ticks that might also want to tick 3 and 5!
I would at least like the option of entering a clinical trial or study because if we don't try we'll never know and someone has to go so I would be willing to entering into either of the subjects mentioned. I live with a life threatening illness and have been involved in case trials associated to that. I would like to think that I have done just a little bit to further the case for continued research and trials and that it will give hope and inspiration to others.
In the past I have obtained funding for and been the director of studies of a Ph.D. student working on Ankylosing spondylitis. Yet I have never been asked about rheumatology research in my own locality.
P. J. Baron, B.Sc.Hons., Ph.D.
I couldn't answer these options as I have been in some research but am not at the moment - and my unit does do research. I need - an 'I have in the past' and my unit does do research!! Needs different worded options IMO.
I think you are missing options, something along the lines of: 'I have been in a research trial/local clinical study but it has ended and I am no longer participating'. Plus 'my unit does do research'
I also could have ticked more than one option. I was asked to participate in a study once but couldnt continue with it. I would like the opportunity to take part in other trials if they suit me. I honestly don't know if my rheumatology unit takes part in research since the one I knew about a few years ago.
I know some research scientists and as I understand it they are not optimistic about opportunities for genuinely useful research. Whilst I may possibly be over-simplifying their views, I think they feel that research is all too often undertaken as a means to an end, that end being career progression, rather than in the spirit of inquiry that can lead to improved understanding and breakthroughs.
When I read about clinical trials related to RA on the internet it so often seems that lots of them are fated from the outset, often by the limited numbers of volunteers involved and some trials also seem to be extremely safe bets that appear designed to confirm the status quo. Additionally it's not obvious how, if at all, one trial relates to another .... the impression I get is that they are very isolated experiments that fail to build on or lead on to others. It's worrying too that the bodies that can presumably afford to hold extensive trials are the drug companies with their vested interests.
So yes, I would like to take part in a trial, but I wouldn't hold out much hope for its usefulness!
(Agree with others that I could have ticked more than one option.)
I would love to be in a trial, but they always turn me down because I have JRA & they say that JRA is different from RA.
Christine
I COULD HAVE TICKED two or three options too!! ,I am afraid the poll isnt that good on
options, think need it reposted with seperate options and the chance of more than one option to be chosen, it could still work but as a bar chart then not a pie chart
Hi everyone
Unfortunately we are limited in the way in which the HU poll is structured currently because sadly it is not possible to tick more than one option, although I agree that this would be better if one could. Also I wanted to get this up to enable me to get some useful data to use in my presentation at this year's British Society for Rheumatology conference on 23rd April, entitled 'How research saved my life' and really wanted to know how many people would like the opportunity to participate in any kind of research. So it was done quite quickly. Thank you all for your comments which are genuinely useful. The idea the session is putting forward is that in an ideal world everyone should have the opportunity to participate in research and I am going to be looking at why it is that patients who do participate in research (even if they are on placebo) tend to do better than those getting routine care.
thanks!
Ailsa
I've ticked on the would like the option to be involved, as I feel new medications are not only maybe our future but more importantly the future off relatives or friends who maybe hit with this evil disease.
I've also never been asked, and don't think my rheumatology department run trials either I did try to search myself however only came up with trials running out off the uk.
My Rhumatoligist put me forward to take part in a trial. I know that the biologicals I am on can be dangerous so I was willing to. Be a bit of a ginny pig for the benefit of those coming after me.
I could have ticked various options, but was unable to do so. I am fortunate in that now my medication is sorted out, I am in fairly good health. I can do my gardening, some DIY, I just have to do things a bit at a time, so that I dont over-do things. So I probably wouldn't be of much use to researchers. I have never been asked if I wouild like to take part in a research programme anyway.
I just found this recording on iplayer - thought it might be if interest and relevance to this poll?
I need an option that says 'I was invited, but refused because of possible side effects it I had taken part'
