Victorian Neural Tube Defects Registry (VNTDR)

The Victorian Neural Tube Defects Registry (VNTDR) is a longitudinal register of all children born with neural tube defects (NTDs) or sacral agenesis (SA) attending the Royal Children’s Hospital (RCH) NTD clinic, Melbourne. NTDs are caused by incomplete formation of the spinal cord and overlying tissues in the developing foetus during the first 28 days of gestation, the unfused portion of the spinal column allows the spinal cord to protrude through an opening. Spina bifida is part of the spectrum of NTDs.
The aim of the VNTDR is to establish a longitudinal registry of children that will facilitate better understanding of the medical, educational and social needs of this population.

Study Summary
Study name Victorian Neural Tube Defects Registry
Study abbreviation VNTDR
Current principal investigator/s Melanie Toy-Laing
Catherine Marraffa
Kate Thomson Bowe
Current project manager

Catherine Marraffa

Primary Institution/s The Royal Children’s Hospital - RCH
Major funding source/s Kooyong Tennis Club Auxiliary
Study focus

To describe trends in the prevalence and clinical profile of NTDs in Victoria, and to determine the best clinical care for children with NTDs, including spina bifida.

Sampling frame

All children born with neural tube defects (NTDs) or sacral agenesis (SA) attending the Royal Children’s Hospital (RCH) NTD clinic, Melbourne (Australia).

Primary study type Register
Year commenced

2015

Is this study ongoing? Yes - the study is ongoing
Ongoing recruitment? Yes
Sample size (N)

195 as of May 2019, with ~10-20 patients recruited per year

Survey data available? No
Imaging data available? No
Linkage to administrative dataset/s? No, no consent to link to administrative dataset(s) obtained
Biosamples available? Yes
Are data available to others outside study team, with appropriate safeguards and structures in line with the cohort’s ethics and governance processes? No
Are there any costs associated with data/sample access for approved requests? There are usually no costs associated with access
Broadest type of participant consent available Specific consent (can be used for this project only)
Study Contacts
Principal investigator/s Melanie Toy-Laing
Catherine Marraffa
Kate Thomson Bowe
Project manager

Catherine Marraffa

Study Contact

Address: Developmental Medicine
Royal Children’s Hospital
Flemington Road, Parkville
Victoria 3052 Australia