VNTDR: Condition specific information
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) | M | |||
ENT surgeries performed (type and date) | M | |||
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 ScaleLegend
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 |
X 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) |