The survey is only 26 questions and should take no more than about 15 minutes to do. 

Note: as relevant organisations are Australasian the registry is open to NZ


  Your privacy is important to us. Read our current privacy policy here. 

Hypersomnolence Australia’s Patient Survey and Registry Q&A

What is the HA Patient Survey?
The survey is designed to help HA set up a patient registry. There are only 19 questions however the majority of them do not require an answer (however please keep in mind the more information we have on file the better we will be able to assist our community). Completion of the survey is entirely voluntary.
What is the Patient Registry?
The patient registry is the Hypersomnolence Australia, Idiopathic Hypersomnia Patient Registry. It is the only patient registry of people diagnosed with Idiopathic Hypersomnia in Australia.

What is the information in the patient registry used for?
It is used for the purpose of aiding research and to assist us to identify key areas of concern that need addressing. It also gives you the opportunity to tell us what your biggest concerns are, the hurdles you face or issues you think need attention.

Will indentifying information I provide in the survey be used without my knowledge?
No, HA is committed to ensuring your privacy at all times. We are also committed to ensuring that your information is secure. The patient registry is only accessible to HA. No identifying information is passed on without your written consent.

Does Hypersomnolence Australia (HA) have a privacy policy?
Yes, HA does have a privacy policy addressing issues relating to the use, collection, security and access of personal information that can be viewed on our here.