LAUNCHING SOON!
Australia’s First Patient Experience Registry for Narcolepsy & Idiopathic Hypersomnia
DARE-PX
Data Registry for Central Disorders of Hypersomnolence – Patient Experience
Have you been diagnosed with a central disorder of hypersomnolence and live in Australia?
DARE-PX is Australia's participant registry for people living with idiopathic hypersomnia, narcolepsy type 1, narcolepsy type 2, Kleine–Levin syndrome and other recognised central disorders of hypersomnolence.
If you have been diagnosed with one of these conditions and live in Australia, we invite you to join DARE-PX.
By joining DARE-PX you will help improve understanding of these conditions, support research, and strengthen advocacy, education and future service planning.
Participation is voluntary. You can withdraw from the registry at any time.
DARE LAUNCHING SOON!
Your privacy is important to us.
Read our Privacy Policy here.
What is DARE-PX?
DARE-PX (Data Registry for Central Disorders of Hypersomnolence – Patient Experience) is a national participant registry established by Hypersomnolence Australia.
It expands on our original Idiopathic Hypersomnia Patient Registry, established in 2013, to include all recognised central disorders of hypersomnolence.
Who can join?
You can join DARE-PX if you:
• live in Australia; and
• have been diagnosed with a recognised central disorder of hypersomnolence.
Why should I join?
Every participant helps improve understanding of central disorders of hypersomnolence.
Information collected through DARE-PX may be used to:
• support approved research
• improve understanding of the lived experience of these conditions
• identify unmet needs
• support advocacy and education
• inform policy and service planning
How is my information protected?
Protecting your privacy is one of our highest priorities. Identifiable information is stored securely and access is restricted to authorised personnel.
Research datasets are ordinarily de-identified before being shared with approved researchers.
Can I withdraw?
Yes. Participation is entirely voluntary and you may withdraw from the registry at any time. Information about how to withdraw is provided in the Participant Information Sheet.
Research and Data Access
DARE-PX is designed to support high-quality research into central disorders of hypersomnolence and to provide a sustainable Australasian data resource for researchers, clinicians, government and other organisations.
Researchers will be able to apply for access to DARE-PX data for approved research projects. Research datasets will ordinarily be de-identified, and applications will be considered through the DARE-PX data access process in accordance with the DARE-PX Governance Charter and Data Access and Publication Policy.
DARE-PX may also assist researchers and clinical trial teams to identify potential participants where individuals have consented to be contacted about research or clinical trial opportunities.
The formal data access application process is currently being established.
DARE-PX has been designed to support research, policy, advocacy, education, service planning and other activities that can improve understanding and outcomes for people with central disorders of hypersomnolence.
Researchers and other organisations may apply for access to DARE-PX data. Data provided to external applicants will ordinarily be de-identified, and all requests will be considered in accordance with the DARE-PX Data Access and Publication Policy.
Research Data Access
Use this application if you are requesting DARE-PX data for a research project, including research intended for publication, conference presentation, a thesis or other research output. Research applications will ask about the project aims, methodology, data required, ethics approval, funding, data security and expected outputs.
For enquiries about future access to DARE-PX data or research collaboration, please contact Hypersomnolence Australia.
Non-Research Data Access
Use this application if you are requesting DARE-PX data for a purpose that is not a research project, such as policy development, advocacy, education, service planning, a briefing paper, report or presentation.