"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
Sleep Apnoea Forum Bringing Help + Support to the Patient
Study Trials for New Non-Invasive Electrical Stimulation Therapy
LATEST UPDATE (24/7/15)
ONLY 3 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea (see below).
LATEST UPDATE (26/6/15)
Final Call for the 6 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea. They are particularly looking for patients with diagnosed Obstructive Sleep Apnoea who struggle with CPAP. Whilst it would be more convenient for those living in the London area, anyone is welcome who are willing to travel and stay in the Guy's & St Thomas' Sleep Disorder Unit for 3 separate nights. Also bear in mind that patients on CPAP/MAD must discontinue the treatment during the trial (approx 3 weeks or so).
People interested should email one of the following:-
Dr Martino Pengo - martino.pengo@gstt.nhs.uk
Kate Reed - kate.reed@kcl.ac.uk
Dr Joerg Steier - Joerg.Steier@gstt.nhs.uk
IMPORTANT UPDATE (28/1/15)
I've been contacted by Guy's & St Thomas' NHS Hospital to a special thank you to all of you who filled in the survey which helped them collect evidence proving the alternative treatment to CPAP is in high demand. Due to the fact they are about to finish the recruitment for the new Non-Invasive Electrical Stimulation Treatment, as an alternative to CPAP for suitable Obstructive Sleep Apnoea sufferers, they are looking for the last 15 patients for the trial. In particular they are now focussing more on patients with Moderate-Severe Obstructive with a BMI<40 - possibly living close to London or in South of England.
If interested email martino.pengo@gstt.nhs.uk OR joerg.steier@gstt.nhs.uk
Will everyone please fill in this short survey, as requested by Guy's & St Thomas', regarding the new Non-Invasive Electrical Stimulation Therapy as an alternative to CPAP for people who need this? CLICK HERE FOR NEW SURVEY
You may remember the original post about this with a link to full information published in CHEST, to help them get the funding needed for the trial http://hope2sleepguide.co.uk/forum/topics/new-treatment-for-sleep-a...
The trials are now currently underway with promising results, and filling in the survey will help this become another option for people. It is an anonymous short survey and can be filled in by people worldwide.
Thank you!
Views: 1432
Replies to This Discussion
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Permalink Reply by Jonathan on
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I live in London, and would love to help find an alternative treatment for sleep apnoea. However, the conditions of the research include:
We will need to ask you to discontinue the treatment with CPAP for the duration of the trial (roughly 2-3 weeks starting one week before the first sleep study). Unfortunately as we are testing a new treatment we cannot enrol patients who cannot be off CPAP for the duration of the trial as this will lead to a possible wrong interpretation of the results. This is why not all patients with sleep apnoea can be enrolled in this study. In particular sleepy patients or patients complaining of very severe symptoms off treatment are not suitable.
I can understand the reason for this, but unfortunately it means I cannot consider taking part.
Jonathan.
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Permalink Reply by Sleep2snore on
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Fo
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Someone stole the rest of my reply lol
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Permalink Reply by Kath Hope on
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I'm not a suitable candidate either which is a shame as I love taking part in new solutions, although I won't be trying any more dental devices, seeing as I'm still recovering from the surgery I had to have since the last one
I'm lucky that I get on well with CPAP and I like to check the data from time to time to check things are going well. Guy's have told me they've had good response to the last appeal and have got some very suitable candidates, so look forward to hearing the results of the trials when it's complete, which of course I'll make sure I update everyone with.
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I am to severe to try it as well, but I sure would give it a go and if they want to send me one I would try it.
If it didn't work my sore ribs would return in the morning.
Never got to the bottom of that
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Permalink Reply by Bill Thomson on
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Well, I volunteered but never heard anything so was assuming I was not suitable - I did have a couple of questions for which I was waiting for an answer. I have now had a message from them but unfortunately I have too many things going on at present to be able to commit to spending several nights in London (and paying the train fares). But I hope it goes well anyway.
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Shame it came at a bad time for you Bill, but I'll keep people posted of progress and when/if it becomes available throughout the NHS.
Bill Thomson said:Well, I volunteered but never heard anything so was assuming I was not suitable - I did have a couple of questions for which I was waiting for an answer. I have now had a message from them but unfortunately I have too many things going on at present to be able to commit to spending several nights in London (and paying the train fares). But I hope it goes well anyway.
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It seems the trial is continuing until about July, so there is a chance I could be included. Will keep the forum updated if I hear any more.
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That's good to hear you may get a chance to take part Bill, and yes please do keep us informed
Bill Thomson said:It seems the trial is continuing until about July, so there is a chance I could be included. Will keep the forum updated if I hear any more.
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Update - at last. I now have three dates in July that suit both me and the hospital. I am looking forward to seeing exactly what the therapy involves and whether it will work for me. Ironically though I have - after 18 years of CPAP - managed to get my local sleep clinic to give me an APAP machine rather than the basic CPAP which along with a comfortable mask might mean I manage more than a few hours of sleep at night with the conventional treatment.
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We're soon into July now Bill
Hope your trial goes well and look forward to hearing a further update. Good Luck!
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