Prioritised clinical domain
Nil
Abbreviation
HDNA Map-HD Registry
Registry contact
Julie Stout, Monash University, Julie.Stout@monash.edu
Year established
2021
Description
The Map-HD Registry is a collection of data about people in Australia who are affected by Huntington’s disease (HD). All family members of people affected by HD are encouraged to register, whether or not they are at risk themselves.
The Map-HD Registry is needed to:
- Map where families affected by HD live in Australia, so that care, services, and funding can be directed to the right locations
- Establish how many people are affected by HD, and in what ways, to support requests to the Commonwealth and local governments for improved funding of care and new treatments; and
- Provide essential information needed for future HD treatments to be approved in Australia and listed on the Pharmaceutical Benefits Scheme (PBS).
Reporting process
Reported in Annual Report - shared with all HD clinics and HD state associations.
Patient Reported Outcome Measures (PROMs)
Nil
Patient Reported Experience Measures (PREMs)
Nil
Participating sites
New South Wales
- Westmead (access only)
Queensland
- Royal Brisbane & Women's Hospital
South Australia
- Flinders Medical Centre
- Royal Adelaide Hospital
Victoria
- Calvary Health Care Bethlehem
- Monash University (registry management site only)
- Royal Melbourne Hospital
Western Australia
- North Metropolitan Health Service, Mental Health, Public Health and Dental Services, Neurosciences Unit WA
Condition
Huntington's Disease
Name
Huntington's Disease Network of Australia Map-HD Registry
Weblink
Lead organisation
Monash University (Stout Lab)
Ethics approval reference
Monash Health HREC Reference: RES-20-0000-887A
Program area