Development and integration of a patient registry for rare congenital anomalies in an inpatient setting: Challenges and recommendations for interdisciplinary research

Issue: Public health research, surveillance and tracking are essential to the prevention and clinical treatment of rare congenital anomalies. Patient registries serve as a critical link to inform clinical practice, although due to low rate of incidence, data collection of many rare conditions can be difficult and inconsistent. Registries have demonstrated success in chronic disease management, infectious disease epidemiology and treatments for common congenital birth defects. Unfortunately, for many pediatric surgical centers rare congenital anomalies are infrequent and few pediatric subspecialists accumulate enough cases to systematically improve care delivery for their patients. Description: This project sought to develop and integrate data collection into the care process of an inpatient surgical service at an academic medial center. Challenges in the process were identified and using Donabedian's quality improvement framework recommendations were outlined. Lesson Learned: Integrating changes into the system in which inpatient care is delivered streamlines the process of data collection and expands the capacity of patient registries. Creating a multi-disciplinary research team and structuring staffing support for a patient registry is critical to successful and thorough data collection. In addition, institution policies which prioritize data collection and registry creation provide enduring structures which support registry creation in academic medical centers. Recommendations: In the evolving health care system, the expansion of electronic medical records will allow for innovative solutions to collect data on unique populations. In light of this, structured integration of patient registries into the care delivery system will prove invaluable for clinical management and public health surveillance.