Hypersomnolence Australia, Idiopathic Hypersomnia Patient Registry
| Information | 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, Hypersomnolence Australia (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 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 here.
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| Registry Location | Australia and New Zealand |
| Registry Participation | Voluntary |
| Registry Contact | Hypersomnolence Australia |
| Adding New Patients to Registry | Affected individuals can register by completing the Idiopathic Hypersomnia Patient Survey
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| Please see the website for more information |