British Snoring & Sleep Apnoea Association

I have suffered sleep apnoea for 20yrs. plus (diagnosed St. Georges. Tooting) never could get on with CPAP. May be available for "Drug Trial" but would like more details please.

Hi have spoken to the organiser of this study and it did finish some time ago. Hope this helps clear up any doubt.

Sleep well

[b]Hi All

I don't know if this is a new trial or a rerun of the original, either way I thought I would rehash an old post of mine as I have done a drugs trial with this company and thought it may be of interest[/b]


Fellow OSA suffers, I have been asked by another member to post something on the site about the Quintiles drug trial, as one of the few posters that have actually gone through it.

It is not my intention to start the debate again of the rights and wrongs of drug trials or indeed the whether people are being treated as guinea pigs for little remuneration.

My sole intention is to provide my perspective on what happened to me and what happens on the trial.

Firstly, I was not attracted by any agency I went to, Quintiles direct. I would also point out that the safety of the drug people get dosed with has already been tested on health volunteers and this is a second stage trial.

I will try and describe day by day what the trial consists of and my feeling as it went on (from memory)

I went in on a Monday lunchtime and had a basic screening, heart, blood pressure and bloods for drugs and other nasty things such as HIV and the like and they give you a full neurological scan.

Then tell you tell you if you pass the first bit of the screening, if you go straight through they give you a bed for the night and do the first overnight screening, in all honesty I can not remember what the AHI had to be but mine had gone up to 50 (from 48) and they said I was well inside .

The next day if the results of the first day and nights test are OK you are admitted properly for the trial. Other than that not much else happens on that day or night.

On the Wednesday you have the overnight screening again and if it varies (if I remember correctly) more than 40% from the first nights results you are excluded from the rest of the trial.

On the Thursday night I was dosed and was hooked up for the night again. I do know that my AHI did drop on the Thursday whether I was dosed or not. On the Friday I got off home just after lunch.

During the time they do give you a few heart traces, blood tests and BP but they are really good at them and I could not really say they caused any discomfort.

You then go back for a follow up a week or so after for some more blood tests and are you OK questions.

The staff are pretty good on the whole, but the very occasional one, I felt did treat you a little bit like you are there for the money. That is understandable when most of the people there are healthy and are only there for the money.

I think when I did the trail there had been 80 or so healthy volunteers to ensure the drug was safe and then about 12 with OSA.

I understand they are still looking for 6 volunteers to complete this phase of the study. The person to talk to for the details is Ibraheem Essack at Quintiles 0207-910-7912. Please feel free you say Phil from Shropshire suggested you contact him. He is a nice guy and will guide you through the entire process as well as being the team Neurophysiologist.

The only suggestion I would make if you decide to go for the trail is to make sure you take something to do because there are long spells of doing nothing.

As I said at the start this post is just to provide information to anyone who may be considering the trial and not to start a debate over the rights and wrongs.

I think this may have long since finished - but someone telephoned earlier today about drug trials so I bumped this up making the info easier to find. If anyone is interested, I'd suggest phoning Quintiles to find out what the latest situation is.

the email addy doesn't work

Bump

For those who are interested,
I went to Quintiles last week and had the screening for the trial. That was a day of tests and an overnight stay. I failed on one of the blood tests and they are now rechecking the results, so did not stay for the duration which would have been a further 4 days and 3 nights.. It was well worth going to get the thorough testing and to help with what may be an important treatment for OSA. As an example the NHS had my AHI measured at 7 using the finger device which kept falling of all night and have treated me has somebody with mild OSA. The full polysomnograph test which Quintiles used measured an AHI of 34. That information alone was worth the trip.
Its not 5 star accommodation, the food is dreadful but with a laptop full of video's, work I can catch up on,internet access, a couple of books etc I will cheerfully go back. The staff are very competent, good humoured and easy to get on with and they compensate you financially for being there.
I would recommend anybody who is interested to go.

tony

[quote="SleeplessinSalop"]HI All

I have only just read this toing and froing with this trial reach or whatever they are called I contacted Quintiles direct and did some further research into this and decided to at least go down and see what they have to say, in answer to some concerns on here the drug is not an opiate.

The conditions of taking part in the trial are quite stringent. I will feedback in a couple of weeks or so if I get through the screening (not that easy apparently) and get accepted.

Well, worst case scenario is a free comprehensive medical :D

Sleep Well[/quote]


How did you do in the screening? I have a friend that is checking into this trial.

Thanks

HI All

I have only just read this toing and froing with this trial reach or whatever they are called I contacted Quintiles direct and did some further research into this and decided to at least go down and see what they have to say, in answer to some concerns on here the drug is not an opiate.

The conditions of taking part in the trial are quite stringent. I will feedback in a couple of weeks or so if I get through the screening (not that easy apparently) and get accepted.

Well, worst case scenario is a free comprehensive medical :D

Sleep Well

Dear Nuneatonman37,

Let me try to answer your comments one by one:

1. Sorry but you're wrong again: we're not 'bunging' anyone here. How can you say we're 'spamming advertising'? We're not selling you anything. We're offering people who suffer from OSA free information and tools that are otherwise (almost) unavailable.

2. I will not discuss our fees here. And frankly, I doubt you'd find ANY fee reasonable :)

3. You're now saying that you didn't need to use our website to learn the details of this study - yet just a some days ago you also posted that 'thanks to TrialReach we can now understand what this trial is all about'. Hmm...

4. Let me clarify something else for you: 'Only' 96 people have taken part in the trial - BUT [b][u]HUNDREDS [/u][/b]MORE HAVE APPLIED (AND DIDN'T MEET THE CRITERIA). And there are about only 10 places left before the study completes the enrollment!

5. It is clear that you are not interested whatsoever in this clinical trial - so why are you the author of approx. 1/3 of all the posts in this thread? Make some room for those who are genuinely interested, please.


Anyway - there's no point in continuing this discussion, so I'll be leaving the forum in your hands :)

If anyone is interested in learning more about this or other trials, without having to be harassed by those not interested, you can visit trialreach.com or contact me on [color=#0000FF]julie at trialreach.com[/color].

Thanks to all for your time and attention,

Julie
Patient Liaison Manager
TrialReach.com

Hey Nuneatonman37,

I mentioned in a previous post that we make money from advertising and, occasionally, from pharmaceutical companies for referring patients into their trials.

I also mentioned that we don't endorse, recommend, etc any trial, company or treatment. Our neutrality is paramount: we don't only show you the trials we get paid for; you can find well over 70,000 studies in our search engine - and needless to say, not everyone is paying us! (I wish...)
[b]
There's no trick or secret - it's how most websites make money (Google, to name one) without having to charge the end users.[/b]

By the way, if you would have read our information about this study, you would have found this on https://www.trialreach.com/cortex/html/view_study.php (see question #14)

[i]What is CX1739?
CX1739 belongs to a new class of drugs called AMPAKINE® compounds. CX1739 is a new drug that has potential value for the treatment of symptoms of patients with Alzheimer’s disease, Attention Deficit Hyperactivity Disorder (ADHD), other related conditions associated with a deterioration in mental capacity, and Sleep Apnoea.[/i]

See my point? Thanks to TrialReach you wouldn't have needed to go to Google or Wikipedia, or any other site. All that info that you find relevant, that it was difficult to find or to understand, the possibility to run a quick test online to see if you qualify for a study, the option to channel questions directly to the investigators, being sure that someone will reply... That's what we're doing! And -for a millionth time- not for the ones who are not interested in participating [u]but for those who are and don't know how[/u].

If we do this right, drug companies could save loads of time and money developing new medicines - and patients could have access to new drugs faster and cheaper.

Do you think this is wrong???

Best,
TrialReach.com

Hi there,

First of all, [u]you don't have to go through us[/u]. We are cooperating with the makers of this drug to make the information about the study accessible to those who might be interested.

We have collected all the available information about this study; interviewed the investigators; created a page that is easy to read and understand; set up an online pre-screening form so you can see on the spot if the trial is right for you (and vice-versa); etc.

As I said on a previous post, we're not trying to convince people to join the study; we're trying to make things easier for those who were already interested.

Helps?

See https://www.trialreach.com/cortex/html/view_study.php

Bernard and Knightrider - I think you have found an incorrect forum for your needs. Please look elsewhere.

Mac (and everyone else),

I'm not trying to convince you to get into a study - clinical trials are a serious matter that should be thought through very carefully by the patients, their loved ones, and their doctors.

I just want to make a couple of points here:

1. There are tens of thousands of clinical trials, involving millions of volunteers taking place every year. You don't get to read about the ones that went well - you read about the one(s) that went horribly wrong (just like you read about the plane that crashed, not about the 000s that made it safely).

2. Payments to volunteers are extremely regulated by the authorities and, in most cases, they are illegal. There are many reasons for this, all very sensible and shared by doctors, companies, patients associations, etc. The £1000 you get in this sleep apnea study is to compensate for your time and inconvenience - no-one expects you to do it because of the money.

3. The overwhelming majority of clinical trials are very carefully designed and run these days. Yet, they do involve some degrees of risk (it is a trial, after all). Unfortunately, we have no other/better way to know if a medicine is safe and effective, so until then, [u]we must rely on, respect, and be grateful to[/u] all those who, for their own individual reasons, decide to take part.

On a separate note - TrialReach is not about convincing those who -like you- don't want or need to participate in a study, to suddenly go and volunteer. TrialReach's mission is to make clinical trials easier to find, easier to understand, and easier to access for those who are interested.

If there's anyone of those in this forum, I hope we are useful to you.

Best regards,
TrialReach.com