Have you ever taken part in a medical trial? Would you?

[givemushypeasachance]

Been for a screening appointment today for a medical trial - as a "healthy volunteer", being a guinea pig to test a vaccine. As I was wating around between urine tests, ECGs, blood tests, much filling in of forms during the consenting process, I wondered what experiences other people may have had.

This is actually my third medical trial - I was in one of the early covid vaccine trials, because I wanted to help out. Didn't have any problems and found it interesting. When that finished up I got emails from a national database of trials I'd signed up to, telling me about other trials happening in my area, I saw another one at the same site I'd be eligible for so put my name forward to do that. It lasted a year, again no problems and was glad to help out. Now the same has happened again so being screened for my third trial. This is a "challenge trial" where they test the effectiveness of the vaccine so that should be fun!

Has anyone taken part and had weird reactions? Or been to one of the intense residential type ones where you have to stay on site for several weeks?

If anyone has any questions about the trials I've done then happy to answer them...

DH did when they were running trials on testing for H pylori.
He was glad to be of service and thousands of people have benefitted from the advances made in treating it thanks to all the volunteers.

Nope nope nope nope nope

Northwick Park drug trial disaster - could it happen again? - BBC News

A friend of dh took part in a trial for a medication for depression. Did it as a student, for the money. The medication made him high with mild hallucinations (he was on site and being observed at the time). A few months after the trial he had a mental health crisis, mixture of mania and paranoia - it was the first of many, he has been sectioned several times. As far as I know he has never disclosed these epsiodes to the trial organisation.

He went from a high-flying young person with a bright future to a very vulnerable man, financially and practically depending on his parents, every now and again needing round the clock care.

That was a phase 1 trial which is the initial safety test and I can see why some people may be reluctant to take part in those - though the article itself quotes the MHRA as saying in the report that procedures had moved on and there were additional safety requirements. And that was back in 2013.

The covid trial I did was phase 1 but I was fine with taking additional risk during a pandemic when it was a race to get vaccines developed. The last trial I did and this one, neither are phase 1. I know dozens of people have already received the vaccines and not had adverse reactions.

I have a very rare disease and I would in a heartbeat of one came up. As it is my surgery appointments always feature fascinated med students blinking encouragingly at me

Blimey if that was a reaction to the drug then it was a very serious one - I'm surprised there wasn't closer follow up monitoring from the trial organisers. The last trial I did lasted a full year after receiving the vaccine, with multiple site visits for monitoring after receiving it, and it was a pretty "normal" vaccine for an infectious disease, not anything like something that could impact your mental health. Trial organisers would also normally have full access to your GP medical records.

Ha, I had a somewhat unusual condition as a child and remember visits to my consultant where he'd be quizzing some medical students about my ECG and I'd sit there gloating than as an 11yo I knew what it was when they didn't. Well duh of course I did. I've got medic family members and have always been keen to help out with medical education/scientific development - the local university can have me for dissection after the organ donation people have first dibs!

My dad did. It was for a cancer drug. He had been given less than 8 weeks to live.

He died 34 years later.

By the time he died everyone who was involved in the initial trial had retired, and they didn’t even use the drug that much anymore 😂

I’ve taken part in many psychological research studies (I work in that area) but not drug trials. I know plenty of people who do.

@KeepTalkingBeth- if the friend can tell the original trial researchers about their mental health, that could be valuable and save others from having a bad reaction. If it is possible to find them.

I recently participated in a trial where they were testing the accuracy of a blood test for bowel cancer detection - it just involved giving blood samples at intervals over a few years and an initial colonoscopy.
I've also been involved in the running of a few medical trials

Trial organisers would also normally have full access to your GP medical records.
I hope so. He became very paranoid about any organisations or authorities and would avoid them strenously, would disappear for months at a time, etc. I'm not using the word paranoid lightly, he was convinced the newsreaders were watching him for example.

Yes I’ve done about seven of them, mostly the residential ones. It paid for my seven years at uni. Never had any issues except my one good vein started to harden up so I stopped. Loads of my friends did them too. It was a facility associated with Manchester uni on the campus. It was great for getting revision done! And not having to feed yourself for a couple of weeks.

I bet running medical trials must involve an awful lot of paperwork and admin - I'm always amazed by how many forms the doctors and nurses are filling in. Today for my consenting I had to individually initial next to about 20 different statements agreeing to everything on the papers and then the doctor repeated most of them again on the electronic system. This is being run across ten different trusts in the UK and the drug company behind it is Indian - the level of organisation behind it all and getting everyone on the same page at the same time with the same procedures, makes my head spin.

Oh actually I lie. One of them was horrible - a hay fever drug. They were testing the efficiency of different carrier substances for the inhaler and one of them made us all cry for hours.

I always suspected a lot of the people involved must be students, this site is near one of the big universities here, and it must suit them being mostly free to come and go for the appointment times.

Back when I was at uni we had the "Common Cold Centre" and they sometimes ran studies which I heard involved things like sitting on a chair with your feet in buckets of cold water with measuring devices in your nose. People may have been having me on...

Yeah it was pretty much all students or recent graduates who hadn’t figured their lives out yet or were using the cash injections to go travelling.

Mind you the ones I've done haven't been residential so the £££ isn't crazy and it's meant to be for "expenses" - if I added up the time it's taken getting to and from there for visits, the screening time, vaccine time, monitoring appointments, it probably equates to about minimum wage. But if you're a student and have more free time then better than nothing!

As someone who helps to run trials (clinical research nurse), yes there is a huuuuuge amount of planning, training, paperwork and co-ordination to run any type of research.

I'm currently in a breast cancer screening trial, basically doing individual risk analysis and then mammogram frequency depending on your risk, to see whether it is more effective than 3 yearly.

I sort of did during COVID. They study was giving some people with COVID medication and some not (I was in the not group) and we all had to keep a diary recording symptoms each day.

Most trials I'm not eligible for as I have pre-existing conditions.

Yeah the money and hassle would not be worth it now, but in the 90s a grand or two went far! Certainly paid for a lot of boozing.

I did one about 20 years ago when I was broke and temping. It wasn't residential and I fitted the various appointments around the work I was doing at the time. It was for an HIV vaccine that was administered vaginally, so it was pretty invasive and the money was therefore good, but I did get some odd side effects and I ended up anaemic from the frequent blood tests.

They knew before the trial was over that the vaccine wasn't going to be any good because it caused all the volunteers to get really large volumes of this fluffy yellow discharge. The idea of it was that it could be given to women in poor African countries without their husbands finding out, so the discharge would have been a bit of a giveaway.

I still found the whole process really interesting and would probably do it again but I suspect I'm now too old to be of interest to medical research!

I would have volunteered for the Covid vaccine.

No, but my Dad was patient 'one' for a treatment that is now routinely used for a very rare condition. I had to be asked as next of kin, as Dad literally at death's door, and it worked. He lived for another 20 years, till age 79, and died of a different issue.

I used to work in clinical research. Yes, there is a massive amount of paperwork during the trial, but even more before the trial even gets started! There are years of research beforehand, along with multiple regulatory approvals from the MHRA and others to check the study is ethical.

Some trials 'might' pay your travel and its a one off visit, right up to several thousands to stay onsite )in quarantine) for many weeks with multiple follow up visits. There is also a difference between phase 1 trials (1st in human) to phase 2, 3 and 4.

Its vital research, but not everyone is suitable- even if they have taken part in other trials. Any side effects are documented and this is how some medications come into use for a completely different reason. Viagra was originally developed for cardiac pain and high blood pressure. Erection were noted by several, male subjects and after further research, we now have viagra!