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Paediatric spinal cord disorders (SCD) are rare, yet carry severe, lifelong consequences for health and functioning. However, there is very little published research on this population, and clinical practice guidelines are lacking. The aim of this study is to collect a rolling minimum dataset of demographic and medical information of paediatric SCD at all key rehabilitation sites across Australia, to develop a longitudinal registry to improve care and patient outcomes, and facilitate future research for this population.

Selective dorsal rhizotomy (SDR) is a well-established neurosurgical intervention intended to permanently reduce spasticity in the lower limbs and improve mobility in selected children with cerebral palsy. The aim of this study is to establish a retrospective and prospective national registry of relevant data pertaining to children undergoing SDR in Australia, and overseas (selection, intervention and outcome). Centres across Australia have agreed on a group of standardised assessments for children undergoing SDR both prior to and after the surgical procedure. The objective of collecting this data is to improve understanding of the short, medium and long term outcomes and any adverse effects of the intervention, and to provide clinicians with information to guide families considering this intervention. Families of children who have undergone or are undergoing SDR (in Australia, and overseas) will be asked to consent to information relevant to SDR being stored in a research-specific online database. Information will be collected from the children's routine clinical assessments. Information will be stored without identifying details to improve privacy. Participation in this trial is voluntary. Data collected in the registry will identify the characteristics of Australian children who have undergone SDR. In addition to details of the surgery including surgical complications; long term adverse events; and outcomes related to the International Classification of Functioning, Disability and Health domains of body structure and function, activity and participation. The primary and secondary outcome measures have been developed for the CP and/or paediatric population and will be collected at baseline, and at one, two, five and ten years post intervention. These include gross motor function and mobility, achievement of goals, pain and quality of life. The need for further interventions after SDR surgery will be collected and include spasticity management and orthopaedic interventions in the ten years following SDR. The prevalence of any long term adverse effects will be collected in the ten years following SDR. The data collected pertaining to adverse events include spine and foot deformity, hip subluxation, sensory impairment and bladder/bowel dysfunction.