Circadian Sleep Disorders Network

Circadian Sleep Disorders Network Highlights from Circadian Sleep Disorders Network, an organization raising awareness and seeking accommodations for Circadian Rhythm Sleep Disorders.

SLEEP 2026 CONFERENCE - Circadian Sleep Disorders Network exhibited at SLEEP 2026, APSS’s annual international sleep con...
07/01/2026

SLEEP 2026 CONFERENCE - Circadian Sleep Disorders Network exhibited at SLEEP 2026, APSS’s annual international sleep conference, held this year in Baltimore, MD. Over 5,000 people attended. Alex Wharton, our executive vice president, set up and staffed the booth in the Advocacy Pavilion, each day. Peter Mansbach, our president, helped out one afternoon. Thanks to the many conference attendees who stopped by with their questions about circadian rhythm sleep disorders.

This year, Circadian Sleep Disorders Network was selected as a recipient of an AASM Foundation SLEEP Travel Grant for Patient Advocacy Roundtable members to attend the conference. https://foundation.aasm.org/award-recipients/2026-grant-recipients/

We attended the AASM Foundation Impact Mixer and other events. It was wonderful to re-connect with colleagues from several advocacy organizations including Project Sleep, Alliance of Sleep Apnea Partners, Sleep Equity Project, Start School Later and Wake Up Narcolepsy.

Alex went to sessions including the ‘NIH Sleep Research Plan Refresh,’ ‘Circadian Biomarkers, Neurophysiology and Brain Health’ and ‘Circadian Timing and Environmental Zeitgebers: From Phenotyping to Real-World Performance.’

CSD-N is participating in a study with Prof Manuel Spitschan of Technical University of Munich. He is requesting us to a...
06/22/2026

CSD-N is participating in a study with Prof Manuel Spitschan of Technical University of Munich. He is requesting us to ask our members to participate in a survey at https://tuspl22-redcap.srv.mwn.de/redcap/surveys/?s=H9DMNMHW9X4JH4X9. His more detailed invitation is below.

Note that this is not CSD-N's survey, which is still ongoing - if you haven't filled that out yet, please do that also, at www.CircadianSleepDisorders.org/survey.

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Survey on diagnostic experiences in Non-24 and related circadian rhythm sleep-wake disorders

Dear CSD-N members,

We are inviting members of the Circadian Sleep Disorders Network community to take part in an anonymous survey about diagnostic experiences in Non-24-Hour Sleep-Wake Disorder, delayed sleep-wake phase disorder (DSPD/DSWPD), and related circadian rhythm sleep-wake disorders.

The survey has a particular focus on Non-24 in sighted people, while also welcoming responses from people with other circadian rhythm sleep-wake disorders, suspected diagnoses, or overlapping experiences. We are especially interested in understanding diagnostic delay, barriers to appropriate care, stigma and misattribution of symptoms, access to knowledgeable clinicians, use of sleep tracking or wearable technologies, and priorities for future research and clinical care.

The survey should take approximately 10 to 15 minutes to complete. Participation is voluntary, and you may skip any question you do not wish to answer.
Survey link: https://tuspl22-redcap.srv.mwn.de/redcap/surveys/?s=H9DMNMHW9X4JH4X9

This survey is being conducted in collaboration with CSD-N as part of an initiative supporting the development of a research proposal for the European Rare Diseases Research Alliance. The findings will help shape future patient-centred research on Non-24 and related circadian rhythm sleep-wake disorders.

We would be very grateful for your input, whether you have a formal diagnosis, suspect a circadian rhythm sleep-wake disorder, have experienced diagnostic uncertainty, or have relevant lived experience to share.

With thanks and best wishes,

Prof. Dr. Manuel Spitschan
Technical University of Munich
on behalf of the ReN24 project team

Please note: This survey is best completed on a laptop or tablet, as smartphones may not display response items correctly.

Circadian Sleep Disorders Network is considering whether to formally recommend permanent standard time.Everybody seems t...
06/06/2026

Circadian Sleep Disorders Network is considering whether to formally recommend permanent standard time.

Everybody seems to hate the clock change, especially in spring. But whether to be permanently on standard time or daylight saving time? On daylight saving time you're getting up an hour earlier, relative to the day-night (light-dark) cycle. So it would seem a bit easier, for DSPD people, to be permanently on standard time. I know it's easier for me to make a 2:00 doctor appointment when we're on standard time than on daylight saving. And it shouldn't matter to Non-24s as long as we don't switch twice a year.

Yes, we all love having it be light later in summer. And we hate that it gets dark so early in winter. It will feel that way regardless of whether we're on standard time or daylight saving. But changing the clock to permanent daylight saving time, and forcing us to get up earlier (relative to the light-dark cycle), for work or school, doesn't seem like the best answer. And in much of the country it means sending kids to school in the dark in winter, or driving to work in the dark, so that the public will rebel -- as it did when permanent DST was tried in 1974 -- and just revert to the prior schedule with twice a year clock changes.

There are demonstrable health benefits to standard time, as can be inferred by comparing the eastern and western ends of the same time zone. In the eastern end the sun rises and sets earlier; the western end is more like being on daylight saving time. So, for example:
"People on the late side of sunset across U.S. time zones were 11 percent more likely, on average, to be overweight and 21 percent more likely to be obese. Diabetes was more prevalent.... Breast cancer rates were slightly elevated, too — about 5 percent higher than average."
(https://www.washingtonpost.com/business/2019/04/19/how-living-wrong-side-time-zone-can-be-hazardous-your-health/, Christopher Ingraham, "How living on the wrong side of a time zone can be hazardous to your health", Washington Post 4/19/19. Includes references to the peer-reviewed research.)

Some research papers on this topic are listed at https://circadiansleepdisorders.org/info.php . Other sleep organizations are also in favor of year-round daylight saving time:

The American Academy of Sleep Medicine (AASM) position statement indicates that “current evidence best supports the adoption of year-round standard time, which aligns best with human circadian biology and provides distinct benefits for public health and safety.” The statement was endorsed by more than 20 medical, scientific, and civic organizations, including the American College of Chest Physicians, American College of Occupational and Environmental Medicine, National PTA, National Safety Council, Society for Research on Biological Rhythms, and World Sleep Society.
(https://aasm.org/aasm-statement-senate-daylight-saving-time-sunshine-protection-act/, "AASM statement on Senate passage of permanent daylight saving time bill", American Academy of Sleep Medicine, 2022)

Comments?

CSD-N ATTENDS NIH SDRAB -- On Apr 9 and 10, the U.S. National Institutes of Health (NIH) Sleep Disorders Research Adviso...
04/14/2026

CSD-N ATTENDS NIH SDRAB -- On Apr 9 and 10, the U.S. National Institutes of Health (NIH) Sleep Disorders Research Advisory Board (SDRAB) met in person in Bethesda. CSD-N president Peter Mansbach attended in person on the 9th, and CSD-N board member Leslie Head and executive vice president Alexandra Wharton attended online. Alexandra's term on the board had expired, and Leslie's has not yet been approved.

Several of the talks touched on the inadequacy of some of the variables that we use to characterize sleep, and Peter noted that, in regard to circadian rhythms, we normally only look at their phase (time of day). We do not measure:
- their amplitude (how alert you are during wake time, how deeply you sleep);
- their waveform (do you wake up quickly or gradually);
- their resistance to change (can you easily adjust your sleep schedule, or is it resistant to change).
Differences in these circadian rhythm attributes may also contribute to the relationship between sleep and overall health.

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4619 Woodfield Road
Bethesda, MD
20814

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