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)
Type of neural tube defect (NTD) M
Highest level of lesion on medical imaging (MRI or CT) M
Medical imaging reports – confirmation of diagnosis M
Microarray results (if completed) M M
Family history of NTD or spina bifida M M
Maternal risk factors (diabetes status, anticonvulsant medications, folate supplementation status) M  
Comorbidities – lifelong (e.g. epilepsy, cerebral palsy, Downs Syndrome,
autism spectrum disorder, learning difficulties, intellectual disability)
M M
Cognitive assessment reports
(inc. date assessed and measure used)
  M
Hearing test report   M
Vision test report   M
Other tests or investigations, inc. sleep studies, urodynamics, renal function (date and results)   M
Medical imaging reports – hip and renal ultrasound  M M
Blood test reports (full blood examination, iron studies, renal studies, vitamin D)   M
Functional level of lesion   M
Mobility – level of ambulation, gait aid use, bracing use, wheelchair use and type   M
Functional Mobility Scale score
(5, 50, 500 metres)
  M:FMS
Bladder management (inc. management tools (e.g. catheterisation),
medications, protective undergarment use and frequency of urinary incontinence)
  M
Bowel management (inc. management tools (e.g. enema), medications and frequency of stool incontinence)   M
Use of respiratory aids (e.g. BiPAP, CPAP, oxygen, dental appliance)   M
Neurosurgeries performed (type and date)   M
Urology surgeries performed (type and date)   M
Gastrointestinal surgeries performed (type and date)  
ENT surgeries performed (type and date)  
Skin integrity management and surgeries (pressure area location, severity, management type, surgery type and date)   M
Orthopaedic procedures performed (condition treated, surgery type and date)   M
Deceased status (date and cause of death) M M M
Registry opt-out status M    
Contact for future research opt-out status M    
Date of visit  M M
Number of non-VNTDR multidisciplinary NTD clinic visits since last VNTDR visit   M

Featured measurements

FMS: Functional Mobility Scale

Legend

A = Administration report abstraction
C = Index child report (reporting on others)
L = Linkage (to other databases)
M = Medical records data abstraction
O = Observation/direct assessment
N = Nurse report
P = Parent/primary caregiver report
Pe = Peer report
S = Self report
T = Teacher report
X = Undefined
X BF = Pertaining to biological father
X BM = Pertaining to biological mother
C = Pertaining to index child
X F = Pertaining to father
X Fam = Pertaining to family
X G = Pertaining to grandparent(s)
X M = Pertaining to mother
X P = Pertaining to parent(s)
X Pa = Pertaining to partner
X Pe = Pertaining to peers
X Pr = Pertaining to primary caregiver
X Si = Pertaining to sibling(s)