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 (Australia). The VNTDR commenced in 2015 for ongoing prospective ascertainment study, with retrospective ascertainment of patients starting in 1993 and, as of May 2019, has 195 participants. 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. The registry will be invaluable for research into NTDs; identifying potential participants for further research into intervention strategies, and providing evidence for best practice medical management or treatments and clinical guidelines development.



Year ≥ 2015 (VNTDR commenced in 2015, but individuals born after 1993 onwards are included in the dataset)
Age 0 – 19 years
# 195 as of May 2019
Time Point Ascertainment Registry – baseline Registry – follow-up(s)
Anthropometrics
Birth
Condition specific information
Demographics
Education and childcare
Environmental exposures (toxins and allergens)
General health
Hearing
Imaging
Medications and supplements
Neurocognitive development
Puberty
Reproductive health and pregnancy
Respiratory health
Sleep
Bioanalyses and omics
Linkage to other databases
Study Summary
Study name Victorian Neural Tube Defect Register
Study abbreviation VNTDR
Current principal investigator/s Melanie Toy-Laing
Catherine Marraffa
Kate Thomson Bowe
Current project manager Catherine Marraffa
Primary Institution Royal Children’s Hospital, Melbourne
Major funding sources Kooyong Tennis Club Auxiliary
Are data available to others outside study team? Not yet
Study focus (e.g. social development) To determine the best clinical care for children with spina bifida
Sampling frame Neural tube defect outpatient clinic RCH
Study type (e.g. randomised control trial, cohort, case-control) Register
Year commenced 2015
Ongoing recruitment? Yes
Current sample (N) 195 (as of May 2019)
Annual recruitment rate 10 – 20
Intergenerational (e.g. offspring)? Yes
Imaging (e.g. fMRI, ultrasound, retinal photograph)? No
Linkage (e.g. BioGrid, VPDC, NAPLAN, Medicare)? No
Biosamples (e.g. buccal, blood, hair)? Blood
Urine
Ethics approvals or requirements (e.g. specific, extended, unspecified, other)? This project only (specific consent)

Principal Investigators

Melanie Toy-Laing

Catherine Marraffa

Kate Thomson Bowe

 

Project Manager

Dr Catherine Marraffa

(03) 9345 5898
catherine.marraffa@rch.org.au

 

Postal Address

Developmental Medicine

Royal Children’s Hospital
Flemington Rd
Parkville 3052