Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Top
Mission
What Are CRSDs?
*** Join! ***
*** Take the Survey! ***
Help Spread Awareness
 
News Items
NIH SDRAB Meeting
Early Survey Results
SleepyHeadCentral on CSD-N
CSD-N Quoted in AASM Paper
V.P. on Light Visors
Registry and Survey Launched!
New MAB Member
New Secretary
Patient Registry Update
CSD-N Board Election Results
Archived News
 
More About Us
Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
Find a Doctor
 
Merchandise
Start School Later
Amazon to Donate to CSD-N
Welzoo to Donate to CSD-N
Websites Link to CSD-N
Recently Added References
  (members only)
Disclaimer
Facebook, LinkedIn, Twitter
Media Kit
Our Email & Office
The shortcut csd-n.org also gets you to this page, with less typing! But don't forget the hyphen!

Our Mission

Circadian Sleep Disorders Network is an independent nonprofit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.

We aim to increase awareness within the medical community and among the general public, to provide emotional support and practical ideas for people living with these disorders, to inform patients and health care providers about treatment options, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.

Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.

What Are Circadian Rhythm Sleep Disorders?

Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, and Shift Work Disorder, which are defined here.

Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon. Questions? See our DSPS Q&A.

Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks. Questions? See our Non-24 Q&A.

Some people use the term reverse sleep, referring to the fact that sometimes people with DSPD and Non-24 end up sleeping during daylight and being awake at night.

Please refer to our descriptions, definitions, and treatments pages for more details, and print out our brochure, fact sheet, and/or Q&A documents to give to others.

Become a Member! or Renew Now!

We can progress toward our mission of promoting awareness and accommodation only if we can demonstrate that we represent a community of people who suffer from these disorders. Please join now, so we can better help you and the CSD community in achieving our common goals. Together we have a voice! More details are on the Join page.

Last year's members: if you haven't renewed yet, please do so now. Renew now!

We are a 501(c)(3) organization based in the U.S., serving the global circadian sleep disorders community. We are a patient organization, entirely supported by member dues and contributions. We are all unpaid volunteers.



Take Our Survey!

Circadian Sleep Disorders Network has launched its PATIENT POWERED REGISTRY AND SURVEY for people with Circadian Rhythm Sleep Disorders. The registry is open to anyone with a circadian rhythm sleep disorder from any country. You can sign up for the registry and take the survey (it's free) at CircadianSleepDisorders.org/registry.

By collecting information from a large number of people actually suffering from these disorders, we can stimulate research into causes, treatments, and effects of circadian disorders.

The information you provide can jump-start research on some of the questions we've been asking about for years - but only if enough people participate. Sign up now (free), and please take the survey.

For more information, click here.

Researchers: You can view the survey questions without taking the survey here. You can request participants to contact you for further research by contacting AltaVoice (website) or emailing Circadian Sleep Disorders Network for further information.

Help Us Spread Awareness

image of brochure cover We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctors and their general doctors on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.

You can print out the brochure on US letter paper (8½x11) or on A4 paper (non--US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.

News Items

NIH SDRAB Meeting June 22-23

NIH Logo The NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) met June 22-23, 2017, to work on updating their research plan. Susan Plawsky, our patient representative on the board, participated. She emphasized the lack of sleep research done on circadian-disordered patients - most of what is done studies normal sleepers, and then treatment is based on that. We need more research on actual DSPD and Non-24 people.

Peter speaking at NIH Peter Mansbach, CSD-N President, presented some preliminary results from our survey. You can view the slides from his talk, and read the text. A video should be available soon. One other CSD-N member attended in person and spoke, and another spoke by web connection. They emphasized the difficulty of living with our disorders. Their remarks were well-received by the board.

Some Preliminary Survey Results

Survey home page Circadian Sleep Disorders Network, in partnership with AltaVoice, a wholly owned subsidiary of Invitae Corporation, is sponsoring a registry and survey. Please take the survey, if you have not already done so. We need more participants to be able to find connections between answers, for example whether perceived sensitivity to light can predict which treatments work best. And researchers want more participants so they can select people with the characteristics they want to study.

Here are some highlights of the preliminary results:

View more results, with numbers and charts, at www.circadiansleepdisorders.org/registry/survey_results_prelim.php. These are preliminary results based on responses of the 208 people who have completed the survey as of May 28.

SleepyHeadCentral Article on CSD-N

SleepyHeadCentral Logo The SleepyHeadCentral blog posted a lovely article on CSD-N, featuring our infographic. SleepyHead Central covers all sleep disorders, but there have been a bunch of blog posts recently highlighting circadian rhythms.

CSD-N Quoted in AASM Paper

Good to see some recognition from the AASM (American Association of Sleep Medicine) researchers of the difficulties many of us have complained about.

"The Circadian Sleep Disorders Network (www.circadiansleepdisorders.org), a nonprofit patient advocacy group, reports members' concerns regarding recognition of their conditions (even among sleep specialists), and related difficulties with access to care"

—Auger RR, Burgess HJ, Emens JS, Deriy LV, Sharkey KM, Do Evidence-Based Treatments for Circadian Rhythm Sleep-Wake Disorders Make the GRADE? Updated Guidelines Point to Need for More Clinical Research, Journal of Clinical Sleep Medicine, 11(10), 2015 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4582047/)

V.P. Quoted on Light Visors

Our vice president, James Fadden, has been quoted in a new Sleep Review article on light visors, Light-Emitting Glasses Envision Sleep Disorder Therapy for Patients on the Go.

*** Registry and Survey Launched! ***

Feb 2017: Circadian Sleep Disorders Network has launched its PATIENT POWERED REGISTRY AND SURVEY for people with Circadian Rhythm Sleep Disorders. The registry is open to anyone with a circadian rhythm sleep disorder from any country. You can sign up for the registry and take the survey (it's free) at https://connect.altavoice.org/?org=CSD-N.

By collecting information from a large number of people actually suffering from these disorders, we can stimulate research into causes, treatments, and effects of circadian disorders.

AltaVoice logo The registry and survey are hosted by AltaVoice (formerly Patient Crossroads), now a subsidiary of Invitae. AltaVoice provides compliance with HIPAA (U.S. Health Insurance Portability and Accountability Act) privacy requirements. They assure you that you own your data, and that no one can identify you without your permission. They refer to the registry and survey as a "Patient Insight Network" (PIN). Here's an AltaVoice video describing it.

They host similar PINs for 100 organizations representing 400 diseases. Other clients include the U.S. National Institutes of Health (NIH) and the U.S. Patient-Centered Outcomes Research Institute (PCORI).

Note that your information is de-identified: anyone accessing the survey responses does not know whose responses they are. To be contacted by researchers you must first agree to be contacted by AltaVoice for research; and subsequently, if a researcher requests AltaVoice to contact people with certain responses, AltaVoice will request you to contact the researcher. Your name and contact information are not given out without your explicit permission.

survey home page Completing the survey can take half an hour or more, but you can stop part-way through and return later. After you complete it, you can see aggregated results showing the breakdown of responses.

By working together and sharing information, we can transform medicine in ways that were unimaginable a decade ago. Your participation may result in new therapies, while rapidly increasing our knowledge of disordered circadian processes.

The information you provide can jump-start research on some of the questions we've been asking about for years - but only if enough people participate. Sign up now (free), and please take the survey.

For more information, click here.

And please consider joining Circadian Sleep Disorders Network.

Questions? Problems? Contact us at .

New Medical Advisory Board Member

CSD-N is pleased to welcome Dr Sabra M Abbott to its Medical Advisory Board. Dr Abbott is a neurologist specializing in sleep medicine at Northwestern University's Feinberg School of Medicine.

Board Elects New Secretary

The CSD-N Board of Directors has elected Annechien Foeth as CSD-N Secretary. We thank her for volunteering her time.

Patient Registry Update

Dec 2016: PatientCrossroads is rebranding itself as AltaVoice. This is the company we are using to host the registry and survey, to handle compliance with legal privacy requirements and to assure that your information remains private (even CSD-N cannot see who answered what and how). As a result of this rebranding some of their software is undergoing changes, and so we have not yet opened to the public as we had hoped. We'll keep you posted.

UPDATE Jan 2017: On Jan 6 AltaVoice was acquired by Invitae. We have been assured that AltaVoice's support of patient-powered registries is not changing, and we are in the final stages of testing our survey. We expect to go public shortly.

CSD-N Board Announces Election Results

Voting for the Circadian Sleep Disorders Network Board of Directors has completed. The winners are:

Annechien Foeth was elected to fill an unexpired term with one year remaining. The others were elected to two year terms. Directors start serving January 15, 2017. Thanks to all who ran.

We note that the election resulted in board members "transcending time zones" - they reside in six countries (in addition to living on different circadian schedules): three are in the U.S., and one each in Belgium, France, Ireland, Norway, and The Netherlands.

Archived News

Archived News 2016
Archived News 2015
Archived News 2014
Archived News 2013
Archived News 2011 - 2012 (incomplete)

More About Us

Niteowl Email List

This is a free mailing list support group for people with DSPS and Non-24 to share their experiences. It's a good place for people just discovering these disorders to hear how others deal with them, as well as for long-time participants to get support and to provide support to others. There are often discussions of evolving treatment, useful to all. For further information, and to sign up, go to www.circadiandisorders.org/list.

Note that membership in Circadian Sleep Disorders Network and membership on this email list are completely separate.

Affiliation

Circadian Sleep Disorders Network is affiliated with this email list, and our volunteers assist the list administrator with some chores. CSD-N was formed by participants on this list, and many of our members post regularly. But we have no control over what appears or who can join, and list membership is completely separate from membership in CSD-N.

Posting

Once you've signed up for the list, you post by sending an email to Everyone on the mailing list receives that post as an email, and you receive everyone else's posts as emails. If you don't like to get separate emails, you can opt to receive in digest form, typically one email a day containing all the day's posts. You make that selection (after signing up) by logging in at www.circadiandisorders.org/list.

Rules

There are some rules:
The rules that the list software enforces are

One frequent problem is that people with more than one e-mail account try to send from an address that isn't registered as a member here. An infrequent problem is that a few e-mail providers aren't accepted at all so another e-mail account must be (acquired and) used. gmail generally works well.

An additional rule is PLEASE do not just reply to a message with a subject line containing "Niteowl Digest, Vol xxx, Issue xxx". That is obviously not informative and if you aren't careful you may include the whole list of messages in the Digest, making your message too large for the list.

Digest or not, it is a good idea to trim whatever you are replying to leaving just enough for people to know what you are replying to.

Of course, don't be snippy or insulting, and please take off-topic conversations off-list. And no advertising.

Archives

Once you've signed up for the list, you can also browse previous posts in the archive at
lists.circadiandisorders.org/private.cgi/niteowl-circadiandisorders.org/.

There is also a mirror of the archive on Yahoo at https://groups.yahoo.com/neo/groups/nite-owl/info. This is useful when the primary archives are not working, as sometimes happens. Login to your Yahoo account, or create one (free) - link is at the top right on that page. Then you have to Join the Yahoo copy of the list - this is separate from signing up for the list itself - there is a button on the Yahoo page to do this.

Unsubscribing

To unsubscribe from the Niteowl email list go to
http://lists.circadiandisorders.org/listinfo.cgi/niteowl-circadiandisorders.org
and follow the directions at the bottom of the page. You will need to know your list password.

If you do not know your list password, send email to
niteowl-request@lists.circadiandisorders.org
with PASSWORD in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). Your password will be sent to you.

If that doesn't work, you can unsubscribe by sending email to
niteowl-request@lists.circadiandisorders.org
with UNSUBSCRIBE in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). If you do this, you will get an email back asking you to confirm. You must follow the instructions and confirm, or you will not be unsubscribed.

Help

For more (or more current) help on list commands, send email to
niteowl-request@lists.circadiandisorders.org
with HELP in the subject line.

Our Brochure

image of brochure cover Our brochure is geared to the general public, to introduce DSPD (DSPS) and Non-24 to people experiencing symptoms of these disorders, and to their families. Please distribute it to anyone who may be interested. Print on lightly colored paper for some color, if you like. We used ivory.

Brochure - web display     Print on US letter size paper, PDF
Print on A4 size paper, PDF

The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)

Our Q&A Documents (FAQs)

We have posted documents describing DSPD (DSPS) and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions, one for DSPS and the other for Non-24:

DSPD Q&A - web     printer     booklet*
Non-24 Q&A - web     printer booklet*

The web formats display nicely in your browser. The printer versions are formatted by your browser for printing a multi-page document. The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).

In Other Languages:

Spanish:     DSPS Preguntas y Respuestas - web     printer    
     No-24 Preguntas y Respuestas - web     printer    
German:     DSPS F&A - web     printer    
     Non-24 F&A - web     printer    

Our Basic Fact Sheet

We also have a one page Basic Fact Sheet that introduces DSPD and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.

Our Infographic

infographic thumbnail Former board member and artist Lily Style has created an infographic describing Circadian Rhythm Sleep Disorders. View it in your browser at www.circadiansleepdisorders.org/docs/CRSDGraphic.php. Feel free to repost the graphic to help raise awareness.

You can print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are also posting JPG images in various proportions for printing directly on different sizes of paper:

You can download these (in Microsoft Windows, right-click and select Save As). To print in Microsoft Windows, right-click on the downloaded file (in File Explorer) and select Print. Or open it in a photo- or image-processing program to use that program's features such as borderless printing.

CSD-N Merchandise

CSD-N mug We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress, at
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)

Start School Later

Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.

Amazon Will Donate Part of Your Purchase to CSD-N

Circadian Sleep Disorders Network
The first time you go to smile.amazon.com you will be asked to confirm Circadian Sleep Disorders Network as your charity. Amazon will remember your selection. But you do have to go to smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.

We have already received several contribution checks from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com

Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.

Welzoo Will Donate to CSD-N

Sign up at Welzoo by clicking here. Thereafter, every time you go to their home page, http://www.welzoo.com, Circadian Sleep Disorders Network gets a penny. They're paying for you to view their advertisements. Make it your browser's startup page and watch the contributions add up!

Websites Link to CSD-N

We have asked other sleep- and health-related web sites to add a link to the CSD-N website, so interested people could learn more about circadian sleep disorders. That also helps our search ranking, making it easier for others to find us. Sites which have linked to us include:

In addition, circadiandisorders.org, which was no longer being maintained, now forwards their traffic to us.

You can help: email other websites with a request to link to Circadian Sleep Disorders Network at www.CircadianSleepDisorders.org. Please use this primary address when suggesting links, not the shortcut.

Recently Added References

This is a list of refences added to our Info page since the last newsletter. The newsletter lists references added since the previous newsletter. These are generally available to members only.

Disclaimer

This web site is intended to provide generic information about CSDs, and is not intended to replace discussions with a healthcare provider. You should not use the information on this website for diagnosing or treating a medical or health condition. All decisions regarding patient care should be made with your healthcare provider.



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Office: 4619 Woodfield Rd, Bethesda, MD 20814

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© 2017 Circadian Sleep Disorders Network
Last modified Jun 25, 2017
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