About MiSCDC

The Michigan Sickle Cell Data Collection (MiSCDC) program began in October 2020 and is a collaborative effort by the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center at the University of Michigan and the Michigan Department of Health & Human Services (MDHHS) to address knowledge gaps in sickle cell disease diagnosis and treatment.

Through collecting state-maintained and clinic-specific data on many aspects of sickle cell disease, MiSCDC strives to:

Increase sickle cell disease-related partnerships across Michigan

Implement standardized methods for sickle cell disease data collection

Communicate findings to stakeholders in the sickle cell disease community

Our Team

The MiSCDC team is comprised of staff from the CHEAR Center and the MDHHS. CHEAR staff are responsible for data acquisition, data linkage, and analysis; MDHHS staff are responsible for the multidisciplinary team, communications plan, and providing data.

A National Initiative

Michigan is one of 11 states that are part of a national initiative created by the Centers for Disease Control and Prevention (CDC) to gather population-based information on where people with SCD live and their use of healthcare services over time.

The Sickle Cell Data Collection (SCDC) program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program helps to inform policy and healthcare standards that improve and extend the lives of people with SCD.

All SCDC programs provide annual data to the CDC. This data provides scientific evidence to inform policy and healthcare practices to improve standards of care, establish a health profile of those with SCD, and assess changes in SCD health outcomes over time.

Ultimately, the project aspires to use this data to improve the quality of life, life expectancy, and health of people with SCD. 

Topics addressed by MiSCDC

Health Outcomes

  • Understand health care utilization of those living with sickle cell disease in Michigan
  • Understand common health problems for those living with sickle cell disease in Michigan

Preventative Care Services

  • Understand the use of clinical practice guidelines and recommendations for people living with sickle cell disease across all ages
  • Investigate immunizations rates among children and adults with sickle cell disease


Access to Care

  • Reduce barriers for transitions from pediatric to adult care for those with sickle cell disease
  • Maximize expansion of Children’s Special Health Care Services (CSHCS) to adults ages 21 and older with sickle cell disease

Capacity Building and Education

  • Communicate findings and increase awareness of sickle cell disease in Michigan
  • Promote services that provide outreach and resources to sickle cell families, patients, and clinicians
  • Collaborate with stakeholders to develop policies to reduce health inequities among the sickle cell disease population