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) |