Clinical trials.

[Mrbojangles]

Good morning all,

My consultant has suggested i may be asked to consider participating in some trials at the Royal Brompton( i have IPF).

Interested to hear from anyone who has experience of such..

Thanks..

[Croydonia]

I’ve done several trials at the Brompton, they’re all run with efficiency, with lots of assessments, examinations and phone calls to keep checking what’s happening. . I would have confidence in them.

[Ergendl]

I haven't taken part in that because I don't have your condition, but I do take part in other clinical trials. It is my way of helping medical researchers improve knowledge and understanding of our conditions and so will hopefully lead to better treatments and medications. You often get better clinical care through clinical trials too, but it can involve more frequent trips to medical establishments, so it's important to read through the explanation leaflets and ask questions about your involvement, before you say yes and join a trial.

[Mavary]

I think if you’ve got the opportunity you’ve got to go for it. My Husband had IPF and there was absolutely nothing they could do apart from treat him for things that cropped up as he went along. Perfenidone was just being trialed and he didn’t qualify to go on the trial. They’ve come a long way since then. Good luck to you and it would be amazing if that will be a cure for IPF.

[Mrbojangles in reply to Mavary]

Thank you.. i have replied to them saying i would be interested.

👍👍

[Hidden]

I took part in a year-long drug trial at RBH for a new bronchiectasis drug, they really look after you, monitoring all aspects of your health. You feel quite special!

I did really well, found out later I’d been given the drug rather than placebo which I knew anyway as my lung function shot up & I didn’t get any infections. I got compassionate use for another two years but wasn’t able to take it permanently, it’s only licensed for cystic fibrosis & NICE won’t let me have it. My consultant has really tried, it’s not even expensive compared with the cost of 2-3 hospital admissions a year, but the bureaucrats won’t budge. If I had CF it’d be a different story.

Anyway I’m rambling here. I often look to see if there’s any other trial I can sign up to, wouldn’t hesitate

[Mrbojangles]

Thank you.