Integrated national registry and nationwide shared EHR system for sickle cell disease: a stakeholder analysis
OA Version
Citation
Abstract
Sickle cell disease is caused due to a genetic mutation that results in a hemoglobinopathy that causes a rare, chronic and often progressive disease associated with severe and life-threatening outcomes. Sickle cell disease is an underfunded, under researched, poorly and inconsistently treated, burdensome disease. In comparison to other rare diseases, there is an overwhelming need to improve sickle cell disease care. This paper aims to propose the need for a combined national registry and shared EHR system to fill a gap in lack of research, as well as improve clinical management of acute care for the disease. As this is a lofty and novel approach, measuring the understanding, influence and potential opposition of those who may be major funders and supporters of sickle cell disease care and research is the first step in implementing the system. A stakeholder analysis is, therefore, necessary prior to creation. This data will provide the foundation in strengthening the understanding of Sickle Disease and its inadequate treatment, while creating an urgency towards action in improving research, knowledge and ultimately the quality of life of those with the disease.