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Improving Registries for Better Healthcare Services and Outcomes for Pediatric Type 1 Diabetes examines the role and utility of registries in improving healthcare delivery and health outcomes of Type 1 Diabetes Mellitus (T1D). Disease registries play an important role in informing policy and practice decisions aimed at reducing cause-specific morbidity and mortality and the associated cost of care of the diseases for which they are created, thereby contributing to improved health system performance. Registries provide a robust means of gathering disease-specific data which can be analyzed to generate contextually sensitive knowledge—to observe disease trends, compare clinical practices across and within populations, and evaluate patient outcomes.
The paper draws on a comprehensive review of published literature to examine existing pediatric T1D registries to provide evidence-based approaches and practices for the creation and maintenance of such registries. The paper is organized in three parts. In Part One, the paper provides an overview of registries and discusses the current state of registries for T1D globally. Part Two examines the principles of registry creation and maintenance for T1D and analyzes how these principles could be applied for new registries.
In Part Three, we describe key findings on the characteristics of existing T1D registries and the data collected within those, including the comprehensiveness and scale of data available in these registries, how the registries have been used to improve efficiency and effectiveness of T1D care, and important resource considerations when creating and maintaining such T1D registries. We further examine data collection processes and structures that govern these registries and discuss these in the context of barriers and enablers that may impact the adoption or otherwise of these processes.
Suggested Citation:
Kwabena F. Lartey, MBChB, MPH; Aliya Moreira, MPH; Shradha Chhabria, MPH; Amanda Reilly, MPH; Kendall Carpenter, MPH; Ché L. Reddy, MBChB, MPH; Rifat Atun for the Global Collaborative for Changing Diabetes in Children. Improving Registries for Better Healthcare Services and Outcomes for Pediatric Type 1. HPHR, Fall-Winter 2022. DOI: 10.54111/HSIL/registries/2023
The Health Systems Innovation Lab (HSIL) at Harvard University is a global research and training lab that specializes in creating high value health systems through targeted innovations. Led by Prof. Rifat Atun, the Lab uses its research, education, innovation and translation activities to work with students, governments, private sector, multilateral entities, and civil society to promote policy and practice, and accelerate the diffusion of health system innovations. The Lab conducts its work within two inter-related streams–Global Health Systems and Innovation—and is driven by a Harvard-based team of interdisciplinary clinicians and academic leaders, and an international group of disciplinary experts.
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