Idiopathic Hypersomnia Patient Survey
This survey is designed to help Hypersomnolence Australia maintain a patient registry that will be used for the purpose of aiding future research and to assist us to identify key areas of concern that need to be addressed. Most of the questions do not require an answer however please keep in mind the more information we have the better we will be able to assist our community.

Hypersomnolence Australia is committed to ensuring your privacy at all times. We are also committed to ensuring that your information is secure. Any information you provide in this survey is accessible only to Hypersomnolence Australia. No identifying information is passed on without your consent.

Hypersomnolence Australia has a privacy policy addressing issues related to the use, collection, security and access of personal information that can be viewed on our website. https://www.hypersomnolenceaustralia.org.au/patientregistry

Please note if you are a parent or guardian of a minor diagnosed with Idiopathic Hypersomnia please enter the person's name who has IH.
Email *
2. First name *
3. Surname (last name) *
4. Date of Birth
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5. Address Please Note: this question is not mandatory. Your address is only so that we can send mail if your email fails.
6. Postcode (if you are from New Zealand please enter your city and NZ eg: Auckland, NZ). *
7. Please indicate which response best describes your connection with Idiopathic Hypersomnia *
8. Approximately what age were you when you first noticed symptoms?
9. Approximately what age were you when you were diagnosed with Idiopathic Hypersomnia?
10. Name of the doctor that diagnosed Idiopathic Hypersomnia
11. When was your last MSLT (Multiple Sleep Latency Test)?
12. Which of the following Idiopathic Hypersomnia symptoms do you regularly experience if you do not take medication. *
You should only choose one of the first two, then choose as many of the following that apply to you. eg: If you typically sleep at least 10-11 hours at night but also nap during the day choose the first one and then either (or both) the 3rd and 4th choice. You don't need to also choose the 2nd choice.
Required
13. Have you also been diagnosed with another sleep disorder? Before marking "other" and adding another condition please check it is not already listed. *
Required
14. What medication/s do you currently take for Idiopathic Hypersomnia? Before marking "other" and adding another medication please check it is not already listed. *
Required
15. What dose do you currently take?
16. What other medical conditions do you have? Before marking "other" and adding a condition please check that it is not already listed. *
Required
17. What symptoms do you *regularly* experience that are NOT caused by any of the conditions you have mentioned above (in question 16). Please note this question refers to what symptoms you experience when NOT taking medication for Idiopathic Hypersomnia (how you feel naturally, medication free). *
Required
18. In addition to the medication you take for Idiopathic Hypersomnia do you regularly take any of the following medication as well (for other sleep disorder/s or other medical conditions)? Please note the medications listed under each class are examples only, there may be many others.
19. If you have Sleep Apnea how is it treated?
20. If you have Sleep Apnea and use a CPAP or BiPAP/BPAP Machine how many hours a night do you usually use it?
Clear selection
21. If you use a CPAP or BiPAP/BPAP Machine or Oral Appliance for Sleep Apnea how many nights a week do you use it?
Clear selection
22. Please provide a brief medical history (ie: childhood illness etc) that preceded your excessive daytime sleepiness
23. Is there a history of diagnosed Idiopathic Hypersomnia or Narcolepsy in your family?
Clear selection
24. What advice did your doctor give you about managing your sleep disorder/s?
25. What advice do you think is important for people to be given when they are diagnosed with a sleep disorder that you did not receive when you were diagnosed?
26. What is your biggest concern/hurdles you face or issues you think need addressing with regards to Idiopathic Hypersomnia?
27. Would you be interested in participating in clinical trials and/or other research with regards to your sleep disorder/s?
Clear selection
28. Are you interested in sharing your story with the media? Please note: when the media contacts us looking for a story we do not share ANY personal information with them. Our role is simply to connect the media directly with whoever is interested in sharing their story. You will receive an email from us to begin with where we will give you details of the type of media request at which point you can either agree to or decline the request. If you agree we will connect you directly to the relevant media outlet.
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