Australian Paediatric Spinal Cord Registry

Paediatric patients with an acquired spinal cord disorder will contribute injury-related and quality of life data to an ongoing national patient registry (either themselves or by parent/caregiver on their behalf, depending on age). The data being collected will be contributed directly into the registry from the clinicians at the participating sites, and/or the family, upon discharge, at 6-months following discharge, then yearly thereafter. At discharge only, an International Standards for Neurological Classification of SCI (ISNCSCI) Assessment will be provided by clinicians if the child is 8-years or older, otherwise they will receive the assessment once they reach 8 years of age. Demographic and unchanging injury-related information, such as date of diagnosis and aetiology, will also be gathered at discharge only via the use of a researcher-developed demographic survey. At 6-months, and yearly thereafter, data contributed to the registry will arise from researcher-developed injury-related Complications Survey and validated questionnaires administered electronically to the patients/their families. The Complications Survey will consist of injury-related information and has been designed based on the International Spinal Cord Society Data Sets, specifically the Core, Musculoskeletal, Autonomic Dysreflexia, and Skin and Thermoregulation Function Data Sets. The validated questionnaires will gather health-related Quality of Life data utilising the PedsQL Generic Core Scales, and Spinal Cord Injury Module. The duration of follow-up will vary. It will be from the time of injury or diagnosis until the patient turns 18 years old, but data collection will cease at 25 years of age, therefore they may continue until 25 years if they wish. Therefore depending on their age at diagnosis, a patient may be followed for up to 25 years, for example, if a child is diagnosed with a spinal cord disorder at birth. However, registry participants are free to opt-out at any time.