Sickle Cell Data Collection Program
Minnesota is one of 16 states that are studying Sickle Cell Disease (SCD) as part of the national CDC Sickle Cell Data Collection (SCDC) Program.
MDH and partners are working together to learn more about the experiences of living with SCD in Minnesota. The primary goal of the SCDC Program is to improve quality of life, life expectancy, and health for those living with SCD. The information we learn can help us answer some important questions:
- Who has SCD?
- Where do people with SCD live and get health care?
- What can we learn about moving from pediatric care to adult care?
- What types of care and services do people with SCD use?
- How does the care that people with SCD receive compare to the care others receive?
- Are there any gaps in care for people with SCD?
SCDC will be gathering information from existing sources: Newborn screening data, hospital discharge data, Medicaid claims, emergency department data, vital records, and clinic data.
Protected health information
The data collected by MDH and partners is Protected Health Information (PHI). This data is only reported in aggregate, meaning numbers are combined and summarized in groups. There is no personal information included, such as names or birthdates.
We will NEVER share or sell personal or identifying information.
SCD in Minnesota
We are working to learn more about SCD in Minnesota. We will share more data as we have it available: Sickle Cell Disease Data and Reports.
- Sickle Cell Foundation of Minnesota
- Children's Minnesota: Hemoglobinopathy and Sickle Cell Program
- Minnesota Rare Disease Advisory Council
- Hennepin Healthcare
- M Health
- Mayo Clinic
- Minnesota Department of Human Services
- Minnesota Hospital Association
- Minnesota Sickle Cell Collaborative