The SCDC collects and analyzes data on the health and health care of Californians living with SCD.
The data will help improve the health, outcomes and quality of life of these Californians by informing decisions about how best to meet their needs. The project is run by the California Rare Disease Surveillance Program, a part of the California Environmental Health Tracking Program and the Public Health Institute.
A longitudinal data collection system collects consistent information about the health and heath care of a specific group of people (population) over long periods of time in order to study trends. This project will meet the following objectives:
- Help understand how many people are living with SCD in California and their health status;
- Provide information needed to establish cost-effective practices that help improve and potentially extend the lives of people with SCD;
- Determine how well current systems of care are meeting the needs of people with SCD and inform the development of new models of care that may better meet those needs; and
- Provide accurate, up-to-date information and guidance for clinical care providers, patients, families, advocates, policy makers and government agencies.
This project is the first step in building a sustainable data collection system that could include information on everyone diagnosed with SCD in the United States, not just those who are seen in comprehensive care centers.
All of the data will be de-identified that is, the data system will not contain names, social security numbers, dates of birth, or other types of information that could be used to identify individual patients. Data are collected from already existing sources such as newborn screening diagnoses, insurance claims data, and state hospitalization data.
Longitudinal Data Collection for Sickle Cell Disease in California Dec. 2015 Report (pdf)
Previous Projects and Materials
Before the Sickle Cell Data Collection program in California, two earlier projects showed the need for data collection on sickle cell disease.
California was one of seven states to participate in a cooperative agreement with the Centers for Disease Control (CDC) and the National Heart, Lung and Blood Institute (part of the National Institutes of Health) in the Registry and Surveillance System for Hemoglobinopathies (RuSH, 2010-2012).
RuSH led to a follow up CDC-funded validation project in California and Georgia called the Public Health, Research, Epidemiology and Surveillance in Hemoglobinopathies (PHRESH, 2012-2014).
PHRESH educational materials include the following:
California Sickle Cell Disease Fact Sheet General public version (pdf)
California Sickle Cell Disease Fact Sheet Provider version (pdf)
Sickle Cell Disease Public Service Announcement
For more on CDC sickle cell data collection activities