British Snoring & Sleep Apnoea Association

I shall ask for an update and report back if there is any news.

Hi all

Help is on the way!

Answers to most of your questions about this (and other) studies can be found at trialreach.com, a search engine that helps people find, understand and access clinical trials.

Search for sleep apnea and filter by country (UK) to find this and other trials taking place now.

Cheers

UPDATE: For those of you interested, information about this particular trial can be found at https://www.trialreach.com/cortex/html/view_study.php

Hi Nuneatonman37,

I'm glad you found the information useful - that was the whole point!

While copy-pasting the text from our site in this forum is cool, there are a couple of (IMPORTANT) things you'd be missing out:

1. 'Questions?' - You can use this feature to ask more details about this study. The question will be reviewed and replied by healthcare professionals familair with the study.

2. 'See if you qualify' - This is an online questionnaire to determine if you qualify for a screening visit (in ther words, if this trial could be for you).


Cheers

I agree NM, you would think that with the profits which Biotech/Pharma companies make, they would be able to set up a system, where they repaid the "lab rats" a commission based on the company profits. So, every time a sale is made, the people who have put their lives on the line, would receive a just reward, instead of a paltry "grand" or whatever the going rate is nowadays.

P.S. Anyone want a kidney or a left teste (one careful owner)?

I completely understand and respect your position. However, let's not disqualify a process that, at the end of the day, makes it possible for all of us to have safe and effective medicines altogether - and certainly don't disqualify those who feel different than you about participating in a study.

In regards to your post-scritps:

TrialReach is an independent search engine for clinical trials. Our mission is to make clinical trials easy to find, easy to understand, and easy to access (you made our point earlier today when you said: at least we have some evidence of what this trial is all about now.)

Our business model is very simple and transparent: we make money from advertisers and, occasionally, from pharmaceutical companies for referring patients into their studies - note however the following:

1. We show ALL (approved) studies from ALL companies, regardless of who pays us or not - our service is for the patients.

2. We absolutely do not endorse, push, recommend, etc taking part in ANY clinical trial. This neutrality is very explicit (see our website), and is at the core of our service which, again, is for the patients.

We do not wish to engage in an argument with you or any other forum member - just hope that the information and the service we provide are useful to those interested in them.

Kind regards
TrialReach.com

For us laydees, priceless!!

Obviously not even worth a mention Mac,





So, I shall put it on EBay forthwith - not sure whether to photograph it in situ, or detached!!

It could make a reasonably interesting paper weight, and generate conversation at boring dinner parties.
Have to be careful that you didn't get it mixed up with the walnuts at Christmas though!

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, we must rely on, respect, and be grateful to 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

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

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

Hi there,

First of all, you don't have to go through us. 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?

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...)

There's no trick or secret - it's how most websites make money (Google, to name one) without having to charge the end users.

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)

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.

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 but for those who are and don't know how.

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

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 HUNDREDS 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 julie at trialreach.com.

Thanks to all for your time and attention,

Julie
Patient Liaison Manager
TrialReach.com

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

Sleep Well