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 |
| Primary participant (at recruitment) | Index child |
| 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 |