Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Description
Why a Registry?
Instructions
Definitions
For Researchers

Circadian Rhythm Sleep Disorders

Registry and Survey

Circadian Sleep Disorders Network is sponsoring a 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 do not need a doctor's diagnosis. You can sign up for the registry and take the survey (it's free) at
https://CircadianSleepDisorders.org/registry.
(Note: that address simply redirects to the actual survey on Invitae at
https://connect.invitae.com/org/CSD-N.)

Note that the signup questions are not the survey! Part of the signup process with Invitae (formerly AltaVoice) involves answering some demographic questions like age, gender, race, etc. This is not our survey. After you've finished signing up you will be taken to our survey, which asks about your circadian disorders, sleep habits, treatment, and other disorders.

By collecting health information from as many people as possible, together we can make a difference. We can:

Invitae logo The registry and survey are hosted by Invitae (formerly AltaVoice, previously PatientCrossroads). Invitae provides compliance with HIPAA (U.S. Health Insurance Portability and Accountability Act) privacy and security 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 Insights Network" (PIN). Here's an Invitae 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 Invitae for research; and subsequently, if a researcher requests Invitae to contact people with certain responses, Invitae 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 (you will need the password you set up during the signup process). 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.

Questions? Problems? Contact us at .

View some preliminary results, based on the first 200 respondents, here.

And please consider joining Circadian Sleep Disorders Network, if you haven't already done so.

Benefits of a Registry: What Others Are Saying

I think of a rare disease registry as a tool for research.... Part of the reason for a rare disease registry in the early stage of research is proof of concept. An advocacy group is able to demonstrate to a clinical researcher that it has a legitimate population and carefully collected data and consent from patients to review their data, among other benefits. The registry essentially provides evidentiary material and justification for a research study.
--Catherine Olson, CoRDS, Global Genes

Insights from registries may result in new approaches to research by uncovering common traits, behaviors, and symptoms that may guide researchers into areas that they had not previously considered. These insights may also change the standard of care for patients. For instance, if we know that many people with a certain rare disease are struggling with a previously unrecognized condition that can be presented to medical specialists and change the standard of care for that disease.
--Global Genes, The Purpose of a Registry

The registry provides us with vital ammunition in the ongoing battle with medical professionals unfamiliar with rare disorders, or with the 'powers that be' in the local school system where educators often refuse to provide one-one assistance. Suddenly you are not some crazy mom making outrageous demands for extra care or special education services or one-on-one supervisory assistance. Instead, you are a concerned parent communicating undeniable research findings.
--Megan O'Boyle, Global Genes

Rare disease registries can play a vital role in providing researchers new insights into rare diseases that can help lead to earlier diagnosis, improved care, and new therapies.
--Global Genes, Conclusion

It would be beneficial for future etiological DSPD investigations to present clear, well-defined lifestyle factors, symptoms and inclusion criteria used to classify DSPD samples.... Such screening data may help to identify predictors and mechanisms driving various subtypes of DSPD. This information could further be used to obtain severity index measures.
--Micic et al, The etiology of delayed sleep phase disorder

INSTRUCTIONS & DEFINITIONS

Note that the signup questions that you get first are not the survey! Part of the signup process with Invitae involves answering two pages of demographic questions like age, gender, race, etc. This is not our survey. After you've finished signing up you will be taken to our survey, called "Circadian Rhythm Sleep Disorders", which asks about your circadian disorders, sleep habits, treatment, and other disorders. Our survey has multiple pages. The actual number is dependent on how you answer some key questions. Please be sure to complete the entire survey. Otherwise, your responses will not be used in analysis.

If you're wondering whether you have in fact completed the survey, you can see by clicking on "Profile" at the top of the survey home page. Your profile shows which surveys you have completed. We are interested in the Circadian Rhythm Sleep Disorders survey.

INSTRUCTIONS

DEFINITIONS:

Delayed Sleep Phase Disorder (DSPD). Sleep occurs later than desired, but usually at around the same time every day (within a few hours). To get enough sleep, one needs to sleep late into the morning or afternoon. Waking up earlier is difficult. The body is resistant to shifting the schedule earlier with the usual sleep hygiene methods. (Other names include Delayed Sleep Phase Syndrome (DSPS), Circadian Rhythm Sleep Disorder – Delayed Phase Type, and similar.)

Non-24-Hour Sleep-Wake Disorder (Non-24). Sleep occurs later and later each day, progressing all the way around the clock. In some persons living on a 24 hour schedule, Non-24 may present as periods of insomnia recurring at regular intervals over weeks or months. (Other names include Free Running Disorder, Hypernychthemeral Syndrome, Circadian Rhythm Sleep Disorder – Free Running Type, and similar.)

Advanced Sleep Phase Disorder (ASPD). Sleep occurs earlier than desired, and the sleeper has difficulty staying up in the evening and wakes up very early. (Other names include Advanced Sleep Phase Syndrome (ASPS), Circadian Rhythm Sleep Disorder – Advanced Phase Type, and similar.)

Irregular Sleep-Wake Disorder (ISWD). Sleep is not regular, and generally there are multiple sleep periods each day. (Other names include Circadian Rhythm Sleep Disorder – Irregular Type, and similar.)

Circadian Rhythm Sleep Disorder (CRSD). Any of the above four disorders. (Also Circadian Rhythm Disorder (CRD))

We are not surveying shift work disorder, which likely has different underlying causes.

Questions? Problems? Contact us at .

Information for Researchers

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

© 2018 Circadian Sleep Disorders Network
Last modified Mar 11, 2018
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