Researchers interested in hearing your Sleep Apnea journey!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
oski_saav
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Researchers interested in hearing your Sleep Apnea journey!

Post by oski_saav » Thu Feb 16, 2023 11:54 pm

Hello!

We are a team of researchers at University of California, Berkeley working on a new sleep device. We are interested in hearing about your sleep apnea journey, how it started, what has worked and not worked, and your relation to the medical establishment. We would like to schedule short (20 minute) interviews for those with sleep apnea.

If you could fill out this short survey, this would be very beneficial to us!

https://forms.gle/7pXwPNjVCDmzdjTg9

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ChicagoGranny
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by ChicagoGranny » Fri Feb 17, 2023 12:51 pm

Are you interested in talking to people who have a very effective CPAP treatment?

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chunkyfrog
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by chunkyfrog » Fri Feb 17, 2023 2:47 pm

When I read "new sleep device", my mind's ear hears Entrance of the Gladiators, Op 68.
:lol: :lol: :lol:

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lazarus
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by lazarus » Fri Feb 17, 2023 3:22 pm

Once upon a time, in a life far, far away, I had life-threatening OSA with an AHI of 115. I got a diagnostic NPSG, got a titration, and was then prescribed PAP. Once I found this forum and learned successfully to optimize my pressures using full data, I am now living happily ever after with a treatment AHI less than 2 as I irritate fellow forum members with my wordy, repetitive posts preaching that nothing is as effective as PAP for stabilizing an airway. The end.

Have your people call my people, but I only work on projects where I get final-cut privileges on my segment.
The people who confuse "entomology" and "etymology" really bug me beyond words.
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Rubicon
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Rubicon » Fri Feb 17, 2023 4:01 pm

How much is the honorarium?
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

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chunkyfrog
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by chunkyfrog » Fri Feb 17, 2023 4:24 pm

Rubicon wrote:
Fri Feb 17, 2023 4:01 pm
How much is the honorarium?
Was there one mentioned ? Where?

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Miss Emerita
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Miss Emerita » Fri Feb 17, 2023 4:26 pm

I looked at the survey, and there are too many required fields I would not want to complete in order to protect my privacy. Could I recommend that you revise the survey?
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Grumpy48
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Grumpy48 » Fri Feb 17, 2023 4:49 pm

FWIW Reddit postings from a 'jilljy' from a while ago. Appears to be research for a wearable device. No thanks, I won't participate.

https://www.reddit.com/user/jilljy/

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ChicagoGranny
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by ChicagoGranny » Fri Feb 17, 2023 4:55 pm

Why so cynical? They are trying to do things that might help.
It will be able to provide deeper analytics than what currently exists in the market. Current wearables (Apple Watch, Oura Ring, Garmin, etc.) only track heart rate and heart rate variability for sleep, but we will be able to track heart rate data as well as brain signal data to understand what is happening as you sleep.

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chunkyfrog
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by chunkyfrog » Fri Feb 17, 2023 5:46 pm

"things that might help . . . "
Most of the devices mentioned are recreational--
So, helping somebody get yet ANOTHER snake oil generator on the market?
No, thank you.

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Rubicon
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Rubicon » Fri Feb 17, 2023 6:31 pm

Show me the money!!!!!
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

Lane101
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Lane101 » Sun Feb 26, 2023 2:22 pm

Good chance this is a scam. Have a look at the UCB Center for Human Sleep Science actual web site and web page for an actual trial at UCSF. They don't hesitate to identify who they are and who is running a legitimate trial. Also the link for those interested in participating in the trial goes to a ucsf.edu site, not the weird web address in the provided link. Recommend anyone interested not click the link and reach out via one of the legitimate links below.


Link to UCB Center for Human Sleep Science
https://vcresearch.berkeley.edu/researc ... ep-science

Link to a UCSF ongoing sleep device trial site (Different school but good example of a legitimate trial participation request)
https://clinicaltrials.ucsf.edu/trial/NCT02431507

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Captain_Midnight
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by Captain_Midnight » Thu Mar 02, 2023 11:02 pm

I rarely do surveys as they are inevitably too long and usually do not permit written responses. I have not looked at yours, but here is a little info you might find useful.

I was skeptical about xpap therapy a dozen years ago, but tried it anyway.

I hated it at first, however I adapted to it within a week or so. In 12 years, I've only missed 4 nights (my machine croaked while I was traveling out of town). I use it for sleep and naps. ( I always take a machine for travel, however I do not use while on an aircraft.)

My list of health improvements (mostly unanticipated) is a mile long. Healthier, happier in every respect. (I'm in my 70s and run 5 and 10 k races. My memory is astonishing. My bloodwork at my annual wellness exams is perfect. I could go on.)

The routine care for the xpap is easy. The inconvenience is minor.

As one who is familiar with surgical procedures and outcomes, I would never consider one for OSA when such a successful and non-invasive is available and affordable.

Any and everyone diagnosed with sleep apnea should try xpap therapy first, as a front line treatment. No drugs or surgery. Why begin anywhere else?

.

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chunkyfrog
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Re: Researchers interested in hearing your Sleep Apnea journey!

Post by chunkyfrog » Fri Mar 03, 2023 12:23 am

I refuse to participate in surveys of any kind.
Most of the time, I am tempted to lie or make up ridiculous crap.
The other day, near the close of a frustrating call with customer service,
I was asked if I would like to do their survey.
I declined, stating that I would likely be rude, abusive and profane--
and nobody deserves that.

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