Has anyone ever taken part in research?

[Kobrakid]

Just that really. I have a chronic kidney disease, diagnosed earlier this year, and have just been contacted about taking part in research. I’ve no idea exactly what will happen, I’m going for a meeting to discuss it later this week. I was wondering if anyone on here as ever done anything like this and is there any questions I should be asking?
Thanks

I've done quite a few over the years and they varied from hospital visits home visits questionairs etc

I can't actually think of any questions for you to ask as they are always very thorough in explaining the process

Some research is anon so you may never know the results

Loads, if my misfortune can help scientists learn how to protect others in the future, then there is some good come of it.

Its questions, medicals, blood tests, etc. Also have donated tissue to tissue banks. None of it is a big issue

Yes I've just done my last Galleri trial (of 3) appointment which is about trying to develop a single blood test which detects cancer at an early stage. I just had to provide a blood sample and they gave me a £10 Tesco voucher, which was a bonus. I'm also involved in My Future Health which is more wide ranging. I've done quite a few, like PPs, over the years.

Anything which helps develop new treatments or greater understanding, I'm very happy to help.

You can withdraw at any stage and the preliminary information is usually very detailed as to what the purpose of the trial is and what you can expect.

Thank you. My diagnosis currently doesn’t have a cure, has very limited treatment options and not much research so I’m happy to be involved as I’ve been told I fit the criteria. I’ve been told it will be intense but not really anything else but strangely feel a bit excited about it all.

It's a great thing to get involved in and I applaud you for signing up. The word "intense" sounds a bit worrying so my only question would be "what does intense mean?". Other than that, I think the more knowledge researchers have, the better. I lost a boyfriend to graft vs host disease just over a year after a stem cell transplant and I was so glad he wanted to share his experience with any and all researchers he could find. Despite being warned of the potential risks, finding a donor seemed like such a miracle I thought he'd be fine. He didn't show signs until 8 months post transplant and I still thought they could fix it. He said that even if it took them 100 years to find a way to reduce the risks he was glad he participated and could stop someone else going through the same. Sending you lots of love

Thank you and I’m sorry for your loss. I just feel that because my options are so limited I need to give this a good shot. I’ve changed my diet quite drastically and dropped a lot of weight so I’m doing everything I can to help manage it but I do have a poor prognosis and I’m young for this to be happening. The word intense concerns me a bit but I want to at least find out what it’s all about. I think I’ll regret not doing this rather than doing it.

Yes. I'm in a couple of mahoosive general studies that take loads of measurements, blood tests, other tests occasionally. I'm also part of a breast cancer study, one unexpected benefit of which was that I got access to some new medication about a year before it went on general release.

I participated in a trial last year. Without giving away any personal medical information, the trial was of a drug which is commonly used for purpose A, which was having its efficacy tested for purpose B.

After doing a bit of research on the drug & finding out that it was widely used with only rare & minor side effects I signed up. I wasn’t paid. The hospital took blood samples from me & measured the usual physical things (weight, BP, heart rate etc) then sent me away with a large bottle of tablets, instructing me to take one daily. I did so, & noticed nothing unusual. I went back to the hospital for monitoring, blood samples etc etc for the next few months, then the trial ended. I stopped taking the tablets & again noticed nothing unusual.

Some time later I received a letter outlining the interim results of the trial, thanking me for my participation & informing me that I had been taking the placebo. If all that sounds uneventful & undramatic, that’s because it was.

I was asked if I would like to start having mammograms at an earlier age than is the norm as part of a trial. I expect that I was part of the control group as I have never needed to be referred by my GP and there is no history of breast cancer in my family.

I’m not expecting to be paid for any of it, that hasn’t crossed my mind to be honest. I know it’s specific to the condition I have and that it’ll be intense and nothing beyond that. I expect it will be uneventful and I’ll be happy if it is 🤣

I've only ever been paid for one and it was a bonus rather than expected. My son did some detailed research for a cancer drug and was well paid but it did involve several days at a clinic and having blood taken frequently. I imagine this was at the 'intense' side of things but as you say money isn't the decider

I to have had access to drugs not usually prescribed (years ago) and I'm glad to say this is now the norm

And as an aside.. even though one bit of research was anon so we wouldn't get the results, I looked at the conclusions and realised I more than likely didn't have, at the time if testing CJD. The research had expected to find x amount of cases and found non

I’ve been and got the information. Had a meeting with the lead research nurse and two consultants. It’ll take around 2 years. It’s specific to my condition and I fit the criteria but need to get through the screening. I’ll receive either the drug or a placebo. Now I’ve been I really really want to do it. My condition has no cure, my prognosis is poor, and there’s two courses of treatment. I’m currently on one and looking to start the other soon. I feel like I’ve got nothing to lose by doing this.