Prevention of RA...is it possible? Urgent request for participants to attend a London focus group Tuesday 26th February.

NRAS is supporting a clinical study being carried out by King’s College London and Guy’s & St Thomas’ NHS Foundation Trust as Co-sponsors with Prof. Andy Cope as Chief Investigator.

The purpose of this study is to determine whether rheumatoid arthritis (RA) can be prevented if targeted immunotherapy is given to subjects in whom autoantibody screening indicates high risk of developing the disease.

Before recruitment for study participants can commence we are hosting a focus group of people to gather opinions of individuals on what would influence people in their decisions to participate in such a clinical study. We hope to have 12 people attend and they will be a mixture of relatives of people with RA as well as people with RA themselves.

Criteria for the focus group is as follows

• Be someone living with RA who also had a close family relative with the RA upon receiving a diagnosis. (i.e. if your parent, sibling, aunt, uncle, grandparent had/has Rheumatoid Arthritis or a similar inflammatory disease).

• Or be someone related to a person living with RA but you are NOT diagnosed or necessarily showing any signs of rheumatoid arthritis at present.

• Be willing to participate in an open and frank discussion expressing your views on the feasibility, safety and acceptability of a clinical study that will require people at high risk of developing RA but without a clinical diagnosis to be treated with a biological therapy.

• Be able & willing to travel to London’s Guy’s Hospital Campus on Tuesday 26th February for a meeting at 11am to 2pm. (travel expenses up to £25 will be reimburse upon production of valid receipts). Refreshments and lunch will be provided.

To register your interest in being part of this focus group (which does not necessarily include or exclude you from the clinical study) please email [e-mail] by 5pm on 18th February. Please give a brief outline in your email as to how you meet the above criteria, your age and sex. If you are selected to participate in the focus group we will send you full details of venue, directions etc. by 25th February.

[mille]

I am a bit bewildered by this, perhaps i am not grasping this. Is it being suggested that people that have close family with R/A could be given biologic drugs or methetrexate to prevent R/A?.

[Hidden in reply to mille]

This is a ground breaking clinical trial and will firstly ascertain those that are at HIGH risk of developing RA and yes then the aim is to treat them with a biologic therapy. The focus group we are recruiting for though is to gather opinions as to how to address the issues people may have about such a trial etc. If you would like to be considered to attend the focus group please email me at [e-mail] with an outline as to how you meet the criteria i.e. are you someone with RA that had a close family member also with RA etc.

[Ozzy]

My grandmother had RA, I was diagnoised in 2008 but a new doctor in December 2012 not sure if RA/PsA awaiting nice to approve new drugs. Are my children aged between 18 and 26 at high risk of developing RA, I asked when I first saw doctor and he said they did not think it was heredity. My daughter is at performing arts school studing dance.

[Hidden]

Dear Ozzy

The aim of the study is to be able to identify if people are at high risk as there has not been any such clinical familiar studies conducted to date.There will be various stages to the study the first being identifying people at high risk then offering the opportunity to take part in the next phase of the study of being treated. There is no way of saying if your children are at risk just because of the family history without some further blood tests and investigations such as MRI etc. This is all proposed as part of the screening for the study. However all we are asking at this point is for people to be part of a focus group to discuss how the recruitment process will need to be conducted and the sort of questions people may want answered before expressing interest in participating.

Please email me on [e-mail] if you or your adult children wish to attend the focus group.

[mille]

Hi Clare,

I have R/A and my mother had R/A but as i live in Scotland i wouldn't be able to attend.

Like Ozzy, i was told R/A wasn't hereditary although there is a genetic link with it. As i have three daughters i find this all quite worrying. Do the blood tests just tell who is at risk or is it 100% accurate that they will get R/A. If it just tells who is at risk then i would find this very worrying, I wouldn't like my daughters worrying that they were going to get it and then perhaps they wouldn't and they could have spent years worrying about nothing. I also think it would be a bit extreme giving people biologics in the off chance that they might get it. Would it be a one off or continued treatment?

Forgive me if i have got it wrong. I am all for research and ways of preventing R/A as it is a horrible disease and if i thought there was a way of preventing it then that would be fantastic.

I would be interested in hearing more about this research.

Best wishes.

[Hidden in reply to mille]

Hi Ozzy

As I implied this is only at the very, very early stages of this trial and until this research is carried out there is no way of knowing how successful it will be...hence trial. There is no one diagnostic test for RA but there are "indicators" that some people with a familiar history and certain biomarkers are more "likely" or at higher risk but as with everything in life there is no 100% certainity. Thank you for your interest. The best way of keeping up to date with all rheumatology research is via our NRAS Members' magazine so if you are not already a member do please consider joining us as this is also the best way to engage in various opportunities of improving future care and treatment of people living with RA.

Regards

Clare

[dannyt]

I would have thought a national charity could arrange for this study to be held in somewhere more central like Manchester. This means a lot of interested people will miss out, myself included as I live in Glasgow. I am sure you have valid reasons for its primary location but would hope you can make further studies more inclusive. I look forward to hearing your feedback on this study and research. Regards Danny

[Hidden in reply to dannyt]

This is not NRAS's study this is a clinical study taking place at Guys that NRAS wishes to support. NRAS do not do clinical research. There are many other clinical trials and studies going on at various academic units across the UK. I you are interested in participating in research you may want to ask your rheumatology team about any local to you.

[dannyt in reply to dannyt]

Hi Clare my bad as I haven't read your post properly thanks for your reply I will definitely look into it.

[Hidden]

The location is prohibitive on travel grounds birmingham or may be manchester would be cheaper, but guys hospital is a centre of excellence

[Hidden in reply to Hidden]

NRAS hold a variety of events across the UK but as my response to Danny above states this is not OUR study this is a clnicial study taking place in Guys hospital.

If you are interested in attending an NRAS volunteer training day there is one planned in Birmingham in April and one in Manchester in May open to any NRAS members who wish to get involved in the work of NRAS be that peer to peer support, research, media outreach, campaigning or fundraising. Email [e-mail] to find out more. Please note these training days are for NRAS Members only.

[Hidden]

Thank you the birminghan one is of interest and yes I AM a member of Nras.. I am still giving guys hospital consideration too x

[Hidden in reply to Hidden]

Hi Summer

We have to let them know final numbers for the focus group today so if you wish to be considered please email me asap with the outline of how you meet the critieria set out above.

Thanks

Clare