Michigan Sickle Cell Data Collection (MiSCDC) Program

The Michigan Sickle Cell Data Collection (MiSCDC) Program is a strategic collaboration led by the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center at the University of Michigan and the Michigan Department of Health and Human Services (MDHHS). Through this collaboration, we ensure the implementation of sickle cell disease surveillance in Michigan and the successful collection and submission of aggregate sickle cell disease surveillance data to the CDC. Analysis of these data will enable coordinated policy changes, health care services improvements, and inform new treatments.

Project start date and end date: September 2020 - Present

Background:
Sickle cell disease (SCD), an autosomal recessive genetic disease, is the most common inherited blood disorder in the US. The majority of the ~100,000 individuals living with SCD in the US are racial and ethnic minorities. Individuals with SCD are at a high risk of early mortality for both men (42 years) and women (48 years), a reduction in average life expectancy of more than 20 years compared to those without SCD. SCD is associated with substantial morbidity, such as severe pain crises, acute chest syndrome, stroke, and infection, which leads to numerous healthcare encounters. The burden of SCD is substantial, in terms of financial implications and quality of life. It significantly affects those living with the disease, as well as families and the healthcare system.

All states perform newborn screening to detect genetic conditions such as SCD. While all SCD cases are identified at birth, there is no ongoing national surveillance of SCD. This results in significant knowledge gaps about the natural history of the disease. These gaps are exacerbated by vast differences in the phenotypic presentation of SCD, the populations of individuals affected, and access to care. These social determinants of health can lead to differential access to quality, comprehensive care and poor health outcomes. In the absence of population-based surveillance, significant improvements in the health of the SCD community will remain elusive.

Purpose and Outcomes:
The overall purpose of the MiSCDC Program is to foster elimination of health disparities among those with SCD in Michigan through participation in the Sickle Cell Data Collection Program. Toward that goal, we will:
1) increase standardization of methods for SCD surveillance;
2) increase understanding of the incidence and prevalence of SCD;
3) increase understanding of the demographics of individuals with SCD;
4) increase understanding of healthcare utilization patterns for individuals with SCD;
5) improve availability of aggregate level surveillance data for utilization in health care policy making decisions; and
6) increase understanding of the epidemiology of SCD among patients, family members, health care providers, and policy makers.

Funder:
This project is funded by the Centers for Disease Control and Prevention (CDC).

Website: 
https://www.miscdc.org/