Victorian Neural Tube Defects Registry (VNTDR)
The VNTDR focuses on describing trends in the prevalence and clinical profile of neural tube defects (NTDs) and sacral agenesis (SA) in Victoria, Australia, and to determine the best clinical care for children with NTDs, including spina bifida. All children born with NTDs or SA attending the Royal Children’s Hospital (RCH) NTD clinic in Melbourne are included in the registry. As of May 2019, the registry included 195 patients, with around 10 to 20 patients recruited per year.
Study design
Registry
Number of participants at first data collection
195 (participants as of May 2019)
Recruitment is ongoing
Age at first data collection
Varied (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2015
Primary Institutions
Royal Children's Hospital (RCH)
Profile paper DOI
Not available
Funders
Kooyong Tennis Club Auxiliary
Ongoing?
Yes
Data types collected
- Secondary data
- None
- None
- Healthcare data
- Medical birth registry
Engagement
Keywords
