New England Sickle Cell Institute Case Study

This case study outlines the establishment and growth of the New England Sickle Cell Institute (NESCI) at UConn Health, aimed at improving care for adult patients with sickle cell disease (SCD). Founded in 2009, NESCI has expanded its patient base from a dozen to over 400, focusing on outpatient management and prevention of complications. The study details the methodology used, including interviews with the Director of Operations and a review of public resources. It describes the challenges faced in providing care, the comprehensive approach taken by NESCI, and the results achieved, including reduced hospitalizations and emergency visits. The case study also identifies four keys to success for the program, emphasizing the importance of collaboration with pediatric partners, building allies within the healthcare system, educating non-SCD specialists, and balancing patient support with autonomy. The findings are intended to inform other organizations looking to enhance their SCD programs.