Improving outcomes for patients with sickle cell disease in the United States making the case for more resources, surveillance, and longitudinal data

Improving outcomes for patients with sickle cell disease in the United States making the case for more resources, surveillance, and longitudinal data

This report discusses why and how systematic data collection for sickle cell disease through population-wide surveillance programs can help to facilitate progress in treatment, and how the many types of registries and databases can be complementary to surveillance data, promoting an economy of scale in resource allocation.

Proposed citation: Kanter, J., Meier, E., Hankins, J., Paulukonis, S., Snyder, A. (2021). Improving outcomes for patients with sickle cell disease in the United States making the case for more resources, surveillance, and longitudinal data. JAMA Health Forum, 2(10). DOI: 10.1001/jamahealthforum.2021.3467.