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)
Cognitive assessment reports
(inc. date assessed and measure used)
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)
Bladder management (inc. management tools (e.g. catheterisation),
medications, protective undergarment use and frequency of urinary incontinence)
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


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)