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ACSQHC-ARCR-061

Prioritised clinical domain
Nil
Abbreviation
VNTDR
Registry contact

Catherine Marraffa, Royal Children's Hospital, Murdoch Children's Research Institute, catherine.marraffa@rch.org.au

Year established
2015
Description

This registry was set up in 2015. The aim was to establish a longitudinal clinical registry with initial retrospective ascertainment of cases for the preceding 22 years (1993 to 2015) and ongoing prospective ascertainment of all children with a Neural Tube Defect (NTD) or Sacral Agenesis (SA) who attend the Spina Bifida/Neural Tube Defect clinic at The Royal Children’s Hospital, Melbourne.

It is hoped the other site in Victoria caring for children with this condition, (Monash Children's Hospital) will join the registry and then the rest of Australia in order to determine current practices ,therapies with the hope that longitudinal outcomes may inform future practice.

Reporting process
  • Feedback to contributing clinicians
  • Shared with consumers
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Victoria

  • The Royal Children’s Hospital Melbourne
Condition
Neural tube defects and sacral agenesis
Name
Victorian Neural Tube Defects Register
Weblink

https://www.mcri.edu.au/neurodisabilityandrehabilitation

Lead organisation
Murdoch Children's Research Institute
Ethics approval reference
Royal Childrens Hospital HREC Reference: 35122A
Program area
Indicators and measurement
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