Clinical trials

[anne999]

Hi am wondering if anyone has been involved in a clinical trial, if so how did you get on it ?

[Hidden]

I am taking part in a research study into RA/RD, just involves answering questions in a booklet relating to how you have felt generally week to week and if you have had to stop meds for any reason what the reason is, or if added any new meds in what effect if any they have had. I was given the option to take part by my Rheumatology Nurse and if at any point you want to withdraw then it's not an issue you just return the booklet. Hope this helps. X

[oldtimer]

My sister (who also has RD and also GCA) was entered into an open trial (i.e. not double blind, it was one where she and the consultant both knew what she was taking) by her consultant after her current treatment was not working well. She had to attend a different hospital and consultant and had loads of tests before going on the medication, frequent monitoring, keeping a daily record of symptoms and signs. This is a medication that has not been approved for use generally yet, so the risks are largely unknown.

She has now been on this for two years and is doing well, some liver enzyme rises but not serious enough to stop it.

Usually, someone doing a trial circulates their colleagues in the area, sometimes advertising on forums also, to ask for patients who are suitable.

[Jeanabelle60]

Hello, although I live in Ireland I have been taking part in a trial being conducted by a University in Manchester. I have a chart that I fill in with regards to medications and hospital stays. It doesn't ask about anything else and the form is for 6 months and then they send me a new one and I post off the complete one. I think but I couldn't say for sure that I was contacted via the hospital I attend. Hope your well.

[Beverley-NRAS]

hi Anne999,

You can try asking your rheumatologist if they know of any trials or alternatively you can search on the UK Clinical Trials Gateway to see if there is anything. I have put a link to it below for you:

ukctg.nihr.ac.uk/

Regards

Beverley (NRAS Helpline)

[anne999]

Thank you Beverley