Prioritised clinical domain
Nil
Abbreviation
AHDR
Registry contact
Joanne Kennedy, Murdoch Children's Research Institute, joanne.kennedy@mcri.edu.au
Year established
2017
Description
The Australian Hand Difference Register (AHDR) is a database of information about children in Australia who were born with a hand and/or arm difference. The AHDR aims to:
- find out how many children are born with a hand/arm difference in Australia
- learn more about specific causes and risk factors
- gain information to help plan services
- identify possible participants for future research
The information gathered will contribute to future improvements in the health and well being of children born with hand differences by identifying clinical pathways and if possible, preventative strategies.
Reporting process
- Feedback to contributing clinicians
- Shared with clinicians
- Reported in Annual Report
Patient Reported Outcome Measures (PROMs)
Nil
Patient Reported Experience Measures (PREMs)
Nil
Participating sites
New South Wales
- The Children’s Hospital at Westmead
- Sydney Children’s Hospital Randwick
Queensland
- Queensland Children’s Hospital
- Gold Coast University Hospital (governance approval pending)
South Australia
- Women’s and Children’s Hospital Adelaide
Western Australia
- Perth Children’s Hospital
Condition
Congenital hand and upper limb differences
Name
Australian Hand Difference Register
Weblink
Lead organisation
Murdoch Children's Research Institute
Ethics approval reference
HREC/17/RCHM/4, The Royal Children’s Hospital HREC
Program area