Establishing an Australian pediatric spinal cord disorder register using consumer, health professional, and researcher perspectives.
Jamie EllisErin GarnerKate E WebsterSusan DarzinsMary Pauline GaleaAdam ScheinbergPublished in: The journal of spinal cord medicine (2022)
This study developed a minimum dataset that could inform an Australian register for pediatric SCD. A register linking to an adult database is recommended to ensure coverage across the lifespan. While items for a minimum dataset have been recommended, this dataset is large. Review and refinement of this list are recommended to ensure the register is not overly time-consuming for practical use.