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.
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.
One problem with studying CRD people is that it is difficult to determine a person's circadian phase. One of the researchers on the panel is developing a blood test for circadian markers. This of course would help immeasurably in diagnosis and treatment as well as research. Another problem is the difficulty in finding CRD people with desired characteristics to study. Our registry is intended to help with that.
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.
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/)
The NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) will meet again June 22-23, 2017, to work on updating their research plan. Susan Plawsky, our patient representative on the board, will participate. Peter Mansbach, CSD-N President, will present some preliminary results from our survey. Several other CSD-N members plan to attend (in person or by web connection) and to speak.
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.
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://www.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 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.
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 .
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.
The CSD-N Board of Directors has elected Annechien Foeth as CSD-N Secretary. We thank her for volunteering her time.
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.
Voting for the Circadian Sleep Disorders Network Board of Directors has completed. The winners are:
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.