Welcome to the Paediatric Australian Spine Registry!

The Paediatric Australian Spine Registry (pASR) aims to track the progression of spine deformity and scoliosis in children and adolescents, and how it is currently being treated by our Australian Spine Specialists. The pASR is an initiative of the Spine Society of Australia in conjunction with the first pASR site, at the Queensland Children’s Hospital (QCH) in Brisbane.

Spine deformity, in children and adolescents, comes in many shapes and sizes and sometimes the cause may not be known. Throughout the world, spine deformity, specifically scoliosis, affects 3-5 % of the population which means that in any Australian classroom, there is likely at least one child who will be affected.

Establishment of the pASR

Clinical registries are a proven way to improve medical treatments by letting the medical care team monitor the quality of care and treatment of patients. The spine surgeons at the Queensland Children’s Hospital in Brisbane saw the need for a registry to monitor spine deformity in children. By partnering with the well-established Australian Spine Registry, the new paediatric registry could make use of the existing resources and technology to ensure children with spinal deformities will receive the best care possible.

Inclusion Criteria

The pilot study includes children aged 9 and older with scoliosis who require correction surgery such as spinal fusions and vertebral body tethering. By focusing on these cases, the pilot study will test how well the registry can track and record surgical cases. The trial will run for two years from 2024 to 2026. Following the pilot period, the registry plans to expand to include patients up to the age of 18 years and will record information about surgeries, non-surgical treatments, and those just being monitored without a planned medical intervention.

How can I be involved?

If your child is being treated at a participating hospital or medical practice, and meets the inclusion criteria, we would like to invite you/your child to join the registry. With your permission, we will collect your child’s clinical and surgical information to help us better understand and improve the future of scoliosis and spine deformity treatment. The pASR is currently opt-in so you will receive an information sheet and consent form during one of your child’s spine clinic visits. The surgeon, nurses, or research team will ask you to complete a short questionnaire before surgery to understand how the condition is affecting your child’s quality of life. The same short questionnaire will be sent at 6 weeks, 6 months, 1 year, and then every year up to 5 years after the surgery. These will be sent to you via an email or regular mail from your treatment team and will assess the impact of the surgery on your child’s life. If a questionnaire is not completed, we may give you a follow up phone call. Participation in the registry is voluntary. You can choose to withdraw from the registry at any time by calling 1800 277 001 (1800 ASR 001) or emailing [email protected]

List of Participating Hospitals

QLD

Queensland Children’s Hospital

Paediatric
Australian
Spine Registry