Towards a National Pediatric Musculoskeletal Trauma Outcomes Registry: the Pediatric Orthopaedic Trauma Outcomes Research Group (POTORG) experience.

This study is a pilot effort towards the broader implementation of a national pediatric musculoskeletal trauma outcomes registry. The primary goal of this project is to explore the feasibility of a web-based data acquisition and management platform and to identify catalysts and obstacles to multi-center collaboration. A prospective cohort of children presenting to the Pediatric Emergency Departments with ankle, femur, supracondylar humerus, tibial spine, or open fractures at five clinical centers between October 2001 and March 2003 comprised the study population. Patients were enrolled via the treating orthopaedic resident, using a web-based data acquisition and management system. Orthopaedic attendees were sent an automated reminder to complete a follow-up form one week after treatment, and parents of enrolled children were sent child and parent health questionnaires by e-mail and mail in order to capture health-related quality of life and post-traumatic stress symptoms. A total of 299 patients were enrolled in the study with an average age of 7.3 years. Post-treatment follow-up questionnaires were completed by 39% of the attending orthopaedic surgeons, and by 43% of the enrolled patients or patient's parents. Children old enough to complete health questionnaires scored lower in 5 of 12 functional domains including Physical Function, Role/Social Emotional/Behavioral, Parental Impact-Emotional, Family Activities, and Family Cohesion. Within the subset of patients sustaining femur fractures whose parents completed health questionnaires, 9.5% reported significant post-traumatic stress symptoms. This study demonstrates the potential of a multi-center web-based registry to facilitate the collection of a rich array of pediatric trauma, treatment and patient-based outcomes data, although new regulatory issues regarding patient privacy pose challenges to such an approach.