The Sickle Cell Data Collection (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.
Project Introduction, presented by Susan Paulukonis (California Rare Disease Surveillance Program) and Mary Hulihan (CDC), November 9, 2015.
Older Adults and Sickle Cell Disease, presented by Dr. James Eckman (Emory University School of Medicine), January 27, 2016.
Emerging Treatments in SCD, presented by representatives from Emmaus, Global Blood Therapeutics, Mast Therapeutics and Pfizer. Presentation by Dr. Ward Hagar (Benioff Children’s Hospital Oakland) about zika virus and SCD, June 14, 2016
Enhancing Access to care for Sickle Cell Disease in South Carolina. Julie Kanter, MD Director of Sickle Cell Disease Research Assistant Professor Medical University of South Carolina.
Translating Health Services Research in Sickle Cell Disease to Policy, Dr. Jean Leclerc Raphael, founding Director of the Center for Child Health Policy and Advocacy at Texas Children’s Hospital and an Associate Professor of Pediatrics at the Baylor College of Medicine.
Creating a New Sickle Cell Clinic: A Case Study: A few dedicated professionals discuss how and why they created a new county clinic in South Los Angeles. Presenters were Dr. Judith Baker, UCLA; Dr. Ellen Rothman, MLK Jr. Outpatient Center; and Dr. Susan Claster, Center for Inherited Blood Disorders
Evaluating and Addressing Challenges to Optimal Sickle Cell Disease Care, Within the Health Literate Care Model
Dr. Marsha Treadwell, Clinical Scientist at the UCSF Benioff Children’s Hospital Oakland
Reducing transfusion complications and other surveillance-supported efforts in hemoglobin disorders
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:
Western States Tele-mentoring Collaborative for Sickle Cell Disease
What is Project ECHO?
Project ECHO (Extension for Community Healthcare Outcomes) is a collaborative model of medical education and care management that empowers clinicians everywhere to provide better care to more people, right where they live.
The ECHO model™ dramatically increases access to specialist level knowledge for treatment in underserved areas by providing front-line clinicians with the knowledge and support they need to manage complex patients. It does this by engaging clinicians through monthly learning sessions and providing them with access to specialist mentors at an academic medical center or hub.
Doing More for More Patients:
- Right Care
- Right Place
- Right Time
- Acquire New Knowledge
- Build Community of Practice
- Reduce Disparities
- Retain Providers
- Keep Patients Local
- Increase Access
- Improve Quality
- Reduce Costs
Why Sickle Cell Disease?
When pediatric patients with sickle cell disease (SCD) transition to adult care they often draw more heavily on a network of local providers including emergency medicine, hospitalists, and primary care providers.
Our ECHO clinic is designed to bridge the gap between those providers and pediatric and adult SCD specialists throughout the western states of Alaska, Arizona, California, Hawaii, Idaho, Nevada, Oregon, and Washington.
We meet monthly for a video conference that consists of 25 minutes of case presentation (however, no identifying patient information is shared). Twenty five minutes of didactic presentation follows, then a 10 minute review and wrap up. We hope to see you on our next call!