The SCDC program 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.
This project will hold webinars each quarter that are free and open to the public. Recordings and slides will be posted here:
Join our email list for quarterly webinar announcements.
The Sickle Cell Data Collection program in California is an initiative of the California Rare Disease Surveillance Program, a part of the California Environmental Health Tracking Program and the Public Health Institute
This project is made possible through funding support from Pfizer, Inc. and Biogen to the CDC Foundation.
Whether you are a health care provider or a family member affected by SCD, you can join our quarterly webinars and be a part of our health promotion and education activities. For more information, please email Faith Raider or join our email list for quarterly webinar announcements.
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:
Sickle Cell Disease Training And Mentoring Program For Primary Care Providers
Many adults living with sickle cell disease (SCD) have challenges accessing care due to a national shortage of SCD-trained hematologists. To help address this gap, the Health Resources and Services Administration (HRSA) is collaborating with the HHS Office of Minority Health to deliver a new telehealth series for primary care providers called STAMP, the SCD Training and Mentoring Program. This free series, taught by hematologists using a case study-based, tele-mentoring approach, will cover the basics of SCD care, such as pain management, hydroxyurea, and preventive services.
To register and for more information go to: https://www.minorityhealth.hhs.gov/sicklecell/