Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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SURVEY SECTIONS:
Instructions & Definitions
Circadian Rhythm Disorder Diagnosis
Other Diagnoses
Preferred Sleep Hours
Enforced Sleep Times
Treatment
Light Therapy
Melatonin Therapy
Light Restriction Therapy
Phase-Delay Chronotherapy
Accommodations
Disability Benfits
Other

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Questions in the CSD-N Survey

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NOTE: THIS IS NOT THE SURVEY ITSELF.
Users: You can register and take the survey at www.CircadianSleepDisorders.org/registry.
This is a list of questions in the survey, to allow researchers to evaluate whether the survey results will be useful to them.

Researchers: To access survey data and request study participation by patients please contact us at . We will refer you to Invitae to get the data and they will contact participants directly with your requests.

Note: Questions with an arrow ("-->"): We originally asked for a text response, as shown to the left of the arrow. For GDPR requirements Invitae changed these to an "Other" checkbox, or omitted the question, as indicated to the right of the arrow.

Showing questions only

INSTRUCTIONS & DEFINITIONS

CIRCADIAN RHYTHM DISORDER DIAGNOSIS

 1. Which of these circadian rhythm sleep disorders do you believe you have? (Select all that apply.)
See definitions on previous page. 2. Which of these circadian rhythm sleep disorders has been formally diagnosed? (Select all that apply.)
See definitions on previous page. By "formally diagnosed" we mean that a doctor or other medical professional told you they thought that you had that circadian rhythm disorder. 3. Which type of medical professional first diagnosed your circadian disorder? (Select all that apply.) 4. Which of the following methods was used by the medical professional to determine that diagnosis? (Select all that apply.) 5. About how long did it take,from when you first had sleep problemsthat you now believe resulted from your circadian disorder, until you were formally diagnosed with a circadian disorder? 6. About how long did it take,from when you first saw a medical professionalfor those sleep problems, until you were formally diagnosed with a circadian disorder? 7. How many different medical professionals did you see for those sleep issues, before one of them diagnosed a circadian rhythm disorder? 8. In what year were you first formally diagnosed? 9. At what age (years) did symptoms of a circadian rhythm sleep disorderstart? 10. Did symptoms of a circadian rhythm sleep disorder start before puberty? Puberty is the age of sexual development. 11. At what age (years) was a circadian rhythm sleep disorderfirst diagnosedby a medical professional? 12. Do you believe you have beenwronglydiagnosed in the past, based on your sleep or other complaints? (Select all that apply.)

OTHER DIAGNOSES

 13. Are you blind? 14. Do you believe your eyes are unusually sensitive to bright light? 15. Do you avoid bright light (other than avoiding light at certain hours to influence your circadian rhythm) for reasons such as eye pain, headaches, etc? (Select all that apply.) 16. Have you ever beencorrectlydiagnosed with any other sleep disorder? (Select all that apply.) 17. Have you ever beencorrectlydiagnosed with any of the following conditions? (Select all that apply.) 18. Did any of these conditions startat the same timeas your circadian sleep disorder started? (Select all that apply.) 19. Did any of these conditions startafteryour circadian sleep disorder started? (Select all that apply.)

PREFERRED SLEEP HOURS - DSPD or ASPD

 This page only appears if the user selected DSPD or ASPD in Question #1

20. If left to your body's natural schedule, what time would you typicallyfall asleep? 21. If left to your body's natural schedule, what time would you typicallywake up?

PREFERRED SLEEP HOURS - NON-24

 This page only appears if the user selected Non-24 in Question #1

22. At what age (years) did your Non-24 start? 23. How did your Non-24 start? 24. If left to your body's natural schedule, how many hours per day on average would your schedule drift later? 25. When sleeping or attempting to sleep on a 24 hour cycle, do you experienceperiodsof insomnia (insomnia for successive nights in a row) perhaps for weeks or months, occurring at regular intervals of weeks or months, alternating with periods (weeks or months) of better sleep?

PREFERRED SLEEP HOURS - CONTINUED

 26. If left to your body's natural schedule, how many hours of sleep would you typically get in your day? 27. If left to your body's natural schedule, about how long would it take you to fall asleep? 28. When sleeping on your natural schedule, are you usually a light, normal, or heavy sleeper? 29. How often do you typically wake up during your primary sleep period? (Asking about really waking up enough to be aware of the time, not asking about "microarousals" such as revealed by a sleep study.) 30. If left to your body's natural schedule, how often would you typically nap? 31. About how long is your typical nap? 32. When you sleep on your body's preferred schedule, during your awake time do you generally feel: 33. How many hours after a natural awakening does it usually take you to feelreasonablyalert? 34. How many hours after a natural awakening does it usually take to feel at yourmostalert? 35. When sleeping on your natural schedule, when are you most hungry? 36. Do you normally sleep on your body's natural schedule, or regularly (at least once a week) force yourself to adhere to a different schedule for work, school, family, or any other reason?

ENFORCED SLEEP TIMES

 This page only appears if the user selected "Regularly force to a different schedule" in Question #36

37. In a typical week, how many days do you force yourself to adhere to a schedule different from what your body prefers? 38. What are the reasons you force yourself to a different schedule? (Select all that apply.)

ENFORCED SLEEP TIMES - Work Days

 This page only appears if the user selected "Regularly force to a different schedule" in Question #36

39. What time do you typicallyfall asleepon work days? 40. What time do you typicallywake upon work days? 41. How many hours of sleep do you typically get on work days? 42. About how long does it take you to fall asleep on work days? (from when you go to bed trying to sleep, until you are asleep) 43. In a typical week, how many days do you force yourself to adhere to the schedule you have just described? 44. On work days, which if any of these adverse effects do you experience? (Select all that apply.) 45. How often are you late for work or school or other commitment due to your sleep disorder? 46. How often do you typically nap on work days? 47. About how long is your typical nap on work days? 48. On days when you have to get up at a set time, when are you most hungry?

ENFORCED SLEEP TIMES - Non-Work Days

 This page only appears if the user selected "Regularly force to a different schedule" in Question #36

49. What time do you typicallyfall asleepon non-work days? 50. What time do you typicallywake upon non-work days? 51. How many hours of sleep do you typically get on non-work days? 52. About how long does it take you to fall asleep on non-work days? (from when you go to bed trying to sleep, until you are asleep) 53. How often do you typically nap on non-work days? 54. About how long is your typical nap on non-work days?

TREATMENT

 55. Have youseriously tried(regularly used) any of the following treatments for your circadian rhythm sleep disorders? (Select all that apply.) 56. Have any of these treatments (alone or in combination) had apositive effectin treating your circadian rhythm sleep disorders? (Select all that apply). 57. Are you currently using any of the following treatments for your circadian rhythm sleep disorders? (Select all that apply.)

LIGHT THERAPY

 This page only appears if the user selected Light Therapy in Question #55

58. When you started the light therapy, did you gradually shift your schedule or shift it all at once? 59. Which other treatments for your circadian disorder were you using at the same time? (Select all that apply.) 60. Did you achieve your desired sleep schedule? 61. Once the sleep times stabilized, around what time did you go to bed? 62. Once the sleep times stabilized, around what time did you get up? 63. Once the sleep times stabilized, how long after you woke up did you start the light therapy? 64. About how long did you use it each day? 65. What was your typical light source? (Select all that apply.) 66. What color was your typical light source? (Select all that apply.) 67. Did light therapy help? 68. What, if any, side effects did you experience? (Select all that apply.) 69. Do you still use this treatment? 70. If not, why did you stop? (Select all that apply.)

MELATONIN THERAPY

 This page only appears if the user selected Melatonin in Question #55

71. When you started the melatonin therapy, did you gradually shift your schedule or shift it all at once? 72. Did you achieve your desired sleep schedule? 73. Once the sleep times stabilized, around what time did you go to bed? 74. Once the sleep times stabilized, around what time did you get up? 75. About how long before bedtime did you take it? 76. Approximately what dose? 77. Did melatonin help? 78. What if any side effects did you experience? (Select all that apply.) 79. Do you still use this treatment? 80. If not, why did you stop? (Select all that apply.)

LIGHT RESTRICTION THERAPY

 This page only appears if the user selected Light Restriction in Question #55

81. How long before your bedtime did you start light restriction? 82. During the restriction period, how much light did you allow? 83. Did you use blue blocking glasses or goggles? 84. Did you use a filter or colored light bulbs to limit blue light at its source? 85. Did you use software to limit blue light from your devices? 86. Did light restriction therapy help? 87. Do you still use this treatment? 88. If not, why did you stop? (Select all that apply.)

PHASE-DELAY CHRONOTHERAPY

 This page only appears if the user selected Chronotherapy in Question #55

89. How many times have you tried phase-delay chronotherapy, as best you recall? 90. How many hoursearlierdid you have to advance your sleep schedule to get to your desired schedule?
If you have tried phase-delay chronotherapy more than once, answer for themost recentattempt. 91. About how many hours per day did youdelay(golater), on average?
(most recent attempt) 92. How many days did it take to get to your desired schedule?
(most recent attempt) 93. How long did you stay on your desired schedule?
(most recent attempt) 94. Why didn't you continue on the desired schedule? (Select all that apply.)
(most recent attempt) 95. How would you describe your overall experience with phase-delay chronotherapy? (Select all that apply.)
(all attempts) 96. Did phase-delay chronotherapy help?
(most recent attempt)

ACCOMMODATIONS

 97. Have you ever applied for accommodationsat workon account of your circadian rhythm sleep disorder?
Not applicable can mean never worked, or work hours didn't conflict with sleep at the time. 98. If you applied for accommodationsat work, were you given those accommodations (answer for your most recent request)? 99. If you applied for accommodationsat work, did you use the services of a lawyer to try to get those accommodations? 100. Have you ever applied for accommodationsat schoolon account of your circadian rhythm sleep disorder?
Not applicable can mean always home schooled, or school hours didn't conflict with sleep at the time. 101. If you applied for accommodationsat school, were you given those accommodations (answer for your most recent request)? 102. If you applied for accommodationsat school, did you use the services of a lawyer to try to get those accommodations?

DISABILITY BENFITS

 103. Do you or did you feel you need to apply for disability benefits to be able to survive with your circadian rhythm sleep disorder? 104. Have you applied for disability benefitsfor your circadian rhythm sleep disorder?
We'll ask about other reasons later. 105. If you applied for disability benefits for your CRSD, were you successful in getting benefitsfor your circadian rhythm sleep disorder?
We'll ask about other reasons later. 106. If you applied for disability benefits for your CRSD, did you use the services of a lawyer to try to get those benefits? 107. Have you applied for disability benefitsfor any other reason? (Select all that apply.) 108. If yes, were you successful in getting disability benefitsfor that reason?

OTHER

 109. Do any other family members (related by blood) haveanysleep disorders? (Select all that apply.) 110. Do any other family members (related by blood) havecircadian rhythm sleep disorders? (Select all that apply.) 111. What is your normally preferred sleep position? 112. What is the latitude (north or south) of your principal residence?
(You can find this on many maps, or the iPhone Compass app, GPS Test for Android, or similar apps.) 113. How often have you been hospitalized because you couldn't sleep or couldn't wake up? 114. Have your sleep hours become more or less flexible as you got older? 115. If left to your body's preferred schedule, have your sleep hours become more or less regular as you got older? 116. Are your symptoms worse or more pronounced during some seasons? (Select all that apply.) 117. Are you presently married or living with a romantic partner? 118. How many children are living with you? 119. What is your highest achieved educational level? 120. Did you stop your education because of health reasons? (Select all that apply.) 121. What best describes your employment status? 122. Are you currently unemployed or employed less than you wish because of health reasons? (Select all that apply.) 123. Do you have any other comments or information you would like us to know?--> Omit this item
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Last modified Jan 5, 2022
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