Sickle Cell Data Collection - Minnesota Department of Health

Sickle Cell Data Collection Program

Project goals

Minnesota is one of eleven 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?


Data sources

SCDC will be gathering information from existing sources: Newborn screening data, hospital discharge data, Medicaid claims, emergency department data, vital records, and clinic data. list of data sources

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.


More information

Updated Thursday, 28-Jul-2022 13:16:04 CDT