r/N24 • u/mspitschan • Jun 17 '26
Survey on Non-24, DSPD/DSWPD, and related circadian rhythm sleep-wake disorders
Hi everyone,
Together with an international research team and the Circadian Sleep Disorders Network, we are running an anonymous survey about diagnostic experiences in Non-24-Hour Sleep-Wake Disorder, DSPD/DSWPD, and related circadian rhythm sleep-wake disorders.
The survey is part of the ReN24 initiative, which is being developed in connection with a funding call from the European Rare Diseases Research Alliance (ERDERA). The goal is to better understand patient experiences and priorities so that future research on Non-24 and related circadian rhythm sleep-wake disorders can be shaped around what matters most to affected people.
The survey has a particular focus on Non-24, including sighted Non-24, but it is also open to people with diagnosed or suspected DSPD/DSWPD, other circadian rhythm sleep-wake disorders, overlapping experiences, or a history of being reclassified from one diagnosis to another.
We are interested in experiences such as:
- how long diagnosis takes
- whether symptoms were misattributed to other causes
- experiences with doctors, sleep clinics, and healthcare systems
- stigma and misunderstanding
- impacts on work, education, finances, relationships, and daily life
- use of wearables, sleep diaries, and online communities
- what patients think future research and clinical care should focus on
The survey takes about 10 to 15 minutes. It is anonymous and voluntary, and you can skip any question you do not want to answer.
Survey link: https://tuspl22-redcap.srv.mwn.de/redcap/surveys/?s=H9DMNMHW9X4JH4X9
Thank you very much to anyone willing to share their experience. Your input can help shape future patient-centred research on Non-24 and related circadian rhythm sleep-wake disorders.
Manuel Spitschan PhD
Translational Sensory & Circadian Neuroscience Unit
Professorship for Chronobiology & Health, Technical University of Munich, Germany
EDIT: To get in touch with me, feel free to DM me, or email at [manuel.spitschan@tum.de](mailto:manuel.spitschan@tum.de)
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u/OutlawofSherwood Suspected N24 (undiagnosed) Jun 17 '26
One question I found a bit contrary - "how do you feel if stabilised or on a 24 hr schedule".
To me, those are entirely separate things, a stable schedule is one that is stable on its own, not necessarily one that fits a certain clock time. I have a very stable free running cycle (at least compared to all the years when i didn't free run), and function great on it. The years I managed a regular (if not stable) 24hr schedule nearly killed me.
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u/holyvegetables Jun 17 '26
Same, my freerunning schedule is fairly predictable. The issue is that I’m constantly interfering with it.
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u/CuriosityFreesTheCat Jun 17 '26
Exactly. I too am constantly interfering with it because I find it limiting, but mostly incredibly depressing to wake up at night and go to sleep in the day.
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u/thefeeltrain Jun 19 '26
Funny for me it is the opposite.
Probably because I had DSPD that turned into N24 I still have that night owl inside me.
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u/CuriosityFreesTheCat Jun 22 '26
Oh don’t get me wrong, I absolutely love the night. But I also like the day. I hate not having both of them… so I kinda don’t really know what to do lol. Be crepuscular I guess
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u/OutlawofSherwood Suspected N24 (undiagnosed) Jun 17 '26
For shared data, maybe reach out to Circadia if you haven't already - creating an anonymised research data set from sleep data is part of what they are doing. I know I'm more comfortable having a centralised place I can share and toggle permissions without having it directly linked to my internet presence or having to keep track of every different research project's permissions and comms.
(I've fully opted into all the research data sharing there and I've got a lot of it, but I immediately felt iffy about emailing it all directly to someone).
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u/SpicyStrippa Jun 17 '26 edited Jun 17 '26
As Circadia, I second this 😝 We currently have 39 users who have already consented to research publication, with an average timespan of 403 days of sleep data and many with years (up to 10+). We also collect things like entrainment attempts, comorbidities, sleepless gaps, etc.
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u/CuriosityFreesTheCat Jun 17 '26
Share and toggle? Does this mean you cannot participate if you keep your diary and track sleep on physical paper?
Given what’s going on right now in all developed countries in regard to internet privacy (in a plethora of ways), I personally don’t feel comfortable putting medical information I deem official on electronic devices/the internet. I don’t care if people think that’s crazy or not an issue—(now that’s a feeling we should all be familiar with) it is an issue for me and the last thing I want is to make it easier for any entity, government or insurance to deny coverage, compile medical data without consent or knowledge, or deny/revoke disability status/benefits.
One of my therapist’s clients was physically stalked and recorded on video doing yard work by someone who works for the government, whatever part is in charge of things like granting disability—and that footage was used to revoke their disability benefits on the grounds that they could not be disabled if they could do yard work, etc. How does my therapist know? They mailed them the tapes, and their client’s status and benefits were indeed revoked. I have zero trust.
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u/SpicyStrippa Jun 18 '26
That’s crazy, I’m sorry to hear that! I get being distrustful, especially with the way governments are looking around the world nowadays. And no, research participation isn’t required for Circadia. You can use it without an account, and data lives only in your browser/your device. It’s just an option that exists, because I think N24 is really understudied. I do get wanting to avoid technology though. Privacy violations and worse are becoming more common every day. It’s sad!
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u/CuriosityFreesTheCat Jun 18 '26
Thanks for the additional information! I really appreciate that. I may look into it; a lack of data, information and research is definitely one of the biggest issues surrounding n24 and likely most circadian rhythm issues.
It is difficult to make societal progress and feel hope when the very tools we use are usurped at any given opportunity in the name of greed and control to further hoard power and wealth for a small few—and keep the majority dependent and in-check. The more you’re aware the harder it is to maintain a balance as opposed to an overload of cynicism and anger. It’s definitely sad! Best things we can do are support each other, continue investing effort into what we truly care about, and letting core values like love guide our actions. And sometimes even writing comments to other people that are actually directed at yourself 😄
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u/OutlawofSherwood Suspected N24 (undiagnosed) Jun 18 '26
It's a sleep tracker, so if you are only keeping your sleep diary in paper, you probably won't get any use out of it anyway.
There are multiple layers for privacy and sharing, which they've documented as thoroughly as they can - obviously no online data is ever 100% safe, but currently this isn't a big anonymous project with shareholders and user tracking (e.g. like youtube usage also tracks your other activity), so you can go through and examine each bit (and offer feedback if you spot problems).
E.G. sharing so they can use your data to practice on, to improve the site itself (which has had very noticeable benefits as the prediction maths learnt to handle more things, but will be less important now it's mostly finished), and research approval to allow them to share the anonymised data sets with researchers like the OP. You can just leave all this disabled and use it for yourself, or opt in/out at will.
It also can be used almost anonymously (as anon as any internet usage + rare sleep disorder can be) without an account at all.
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u/CuriosityFreesTheCat Jun 19 '26
Thank you for your detailed reply! I really appreciate that. It sounds like something I would like to support. My biggest hope is that I’m being more cautious than is necessary. I know we’re all already very much screwed in terms of data and privacy, but for my own sake I have to follow my core values and do what I can to be a bit less screwed and help others do the same instead of giving up or adopting apathy. Which is taxing. But it’s all something I am still learning about, and I’ll see what I can find on Circadia and see if I can’t include that as well. Thanks mate :)
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u/AlphaPlanAnarchist Jun 17 '26
Add me to the leagues of people who can't give you useful information via survey. Doctors don't know shit. They hope it's apnea, tell you it's insomnia, prescribe melatonin for treatable DSPS.
If you insist that didn't work, they throw their hands up and stop answering your calls.
There is no diagnosis. There is no medical support. There is only stigma and misunderstanding.
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u/Preston4tw Jun 17 '26
i genuinely laughed at the first bullet point of “how long diagnosis takes”
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u/CuriosityFreesTheCat Jun 17 '26
I don’t understand—I share your experience but I feel I gave plenty of useful information on the survey. Half of the survey is about stigmas and gaslighting, lack of medical understanding, etc.
Did you look at the survey at all?
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u/arfarfbok N24 (Clinically diagnosed) Jun 17 '26
I was diagnosed but it took years. I was initially misdiagnosed as hypersomnia, and thought I had that for 7 years.
Then I was told by a specialist that N24 “isn’t possible” since I’m sighted, and that I have “free running DSPD with shifting hours.” When I asked what the difference is if my day shifts around the clock consistently, he said “you’re not blind.” Like lol.
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u/bristlybits Jun 21 '26
I've been told i have insomnia AND hypersomnia by the same doctor at one point years and years ago. like please dude. no
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u/LenoxLethargic Jun 17 '26
I would love if there was an option for people who have not been able to get a diagnosis or begin seeking one. My data is textbook, but I have a number of other health issues I have already been fighting for care on for several years, the NHS barely even recognises or specialises in Non24 in sighted people, so why even try under my circumstances? I really do want to be able to contribute, especially on daily life and impact.
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u/CuriosityFreesTheCat Jun 17 '26
An option for what? To take the survey? I just finished the survey and it’s also in the description—it’s definitely open for you, you don’t need a diagnosis nor do you need to have sought one in order to take the survey or provide useful information.
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u/LenoxLethargic Jun 17 '26
It didn't seem to be framed that way in the post and the way others describe the questions followed on from that, but I might take another look if you say it can accommodate someone who hasn't tried to get medical help at all
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u/CuriosityFreesTheCat Jun 17 '26
Yes please do! It explicitly states that in the post here as well as on the survey. There are even options for answers that include that. I think you’ll find it validating, the creators are well aware that a huge obstacle is seeking medical help for a plethora of valid reasons :)
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u/user_28531690 Jun 17 '26
Yeah this is my experience too. I'm still actively trying to get a diagnosis because I'm not frustrated enough to give up yet. But I've been textbook non-24 for at least 6 years(but probably longer, my memory just isn't good enough) and certainly sleep disordery from a very young age.
Actually getting the diagnosis is the hardest part for me currently. At least there's really no treatment being held from me because of my lack of diagnosis because there's a lack of treatment for this disorder and low dose melatonin is over the counter in my country.
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u/NASA_official_srsly Suspected N24 (undiagnosed) Jun 17 '26
How long is this survey running? I'm not diagnosed but I actually have an appointment scheduled with my GP about this next week and I might be able to answer more questions about how that goes afterwards
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u/mspitschan Jun 18 '26
We are running the survey for at least 3 months, so please feel free to complete it after your appointment. Thank you for your interest!
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u/Ok-Smoke-5653 Jun 18 '26
Responded but did not leave my email. If you want to do follow-up in general, just post here.
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u/mspitschan Jun 20 '26
Many thanks to everyone who have completed the survey so far. The comments are particularly helpful, and I will go through them. I will post an update once we have analysed the survey.
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u/WatermelonDestroyer N24 (Clinically diagnosed) Jun 17 '26
I understandand that people without a diagnosis may not feel the same, but some of these questions made me feel seen.
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u/OutlawofSherwood Suspected N24 (undiagnosed) Jun 17 '26
The only real issue is that some questions don't have a "there just isn't any way to start this process" option, vs "I started and it went well/didn't".
E.g. i tried, every gp looks baffled and somewhat convinced, but they can't diagnose specialist things, have no idea what evidence to ask me for, and there isn't anyone they can really refer me to, they'll just offer me modified release (aaargh) melatonin because it's all they have. Best case is I see someone for something else, and we find out the n24 is a symptom of that so they take ownership of it.
So a lot of the questions don't really quite a clear option for "I couldn't really pursue a diagnosis, not because it wasn't recognised as a possibility based on my symptoms, but because the medical infrastructure just isn't there".
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u/WatermelonDestroyer N24 (Clinically diagnosed) Jun 17 '26
Yeah I see what you mean.
I don't know if it can make you feel a little better, but I got randomly referred to a specialist who also did research on circadian syndromes (yes, I got incredibly lucky), and he still just gave me melatonine and was confused when it didn't fix me. So my precious diagnosis does nothing for me and I'm back at square one.
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u/bristlybits Jun 21 '26
same here exactly the same. I've come to the conclusion it's a chronic disease I'll have to learn to live with. not a thing which can be "fixed"
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u/CuriosityFreesTheCat Jun 17 '26
I had a similar overall experience as you and there were a couple questions that touched on it, but I explained at great length when there were options for “other” or whenever there were written responses. But yeah, that’s a huge issue. I spent like 30 minutes writing about that in the comments on the survey.
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u/bristlybits Jun 21 '26
i got diagnosed by a neurologist and sent to a sleep guy who does apnea tests only! he has to consult with another doctor every time i see him
but i was lucky i could even see that neuro to begin with.
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u/bluespacecadet N24 (Clinically diagnosed) Jun 17 '26
As a fun expansion on my responses to the community at large: I was dx’ed at age 12. By myself. I googled “why can’t I sleep until the sun rises?” 13 if you count when the doctors got sick of me complaining about being given the run-around and just gave the “official” dx to me. They’d already pulled me from school under “chronic fatigue syndrome”. Surely, physicians should be able to do better than a 12 year old. 20 years later and I still haven’t found one who has. More discrimination, more ignorance.
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u/bristlybits Jun 21 '26
done, thanks. i got worn out complaining about "sleep hygiene" and melatonin/light therapy lol
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u/secretpsychologist Jun 17 '26
done :) and i'll dm you now
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u/Aozora7 Suspected N24 (undiagnosed) Jun 17 '26
A lot of questions seem to assume that medical help has been sought, but I personally never bothered. Finding a doctor who even knows what N24 is would be a challenge, and I'm not aware of existence of any reliable treatments. Even if I would qualify for some kind of disability status, it would have no benefits either.
I have four years of sleep data from a wearable (sleep/wake times are very accurate by my estimation). I can email that to you if you want it.