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Knowledge and Action

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Data 2017-06-02T01:01:01+00:00


California Rare Disease Surveillance Program

Sickle Cell Data Collection Project

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.

Project Overview

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:

  1. Help understand how many people are living with SCD in California and their health status;
  2. Provide information needed to establish cost-effective practices that help improve and potentially extend the lives of people with SCD;
  3. 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
  4. 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.

Project Materials

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

Sickle Cell Data Collection Logo

Webinar Series

  • Webinar 8

    Reducing transfusion complications and other surveillance-supported efforts in hemoglobin disorders. By Dr. Angela Snyder, Dr. Jane Branscomb and Dr. Ross Fasano.

  • Webinar 7

    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.

  • Webinar 6

    A Case Study: A few dedicated professionals discuss how and why they created a new county clinic in South Los Angeles.

  • Webinar 5

    Translating Health Services Research in Sickle Cell Disease to Policy.

  • Webinar 4

    Enhancing Access to care for Sickle Cell Disease in South Carolina.

  • Webinar 3

    Emerging Treatments in SCD.

  • Webinar 2

    Older Adults and Sickle Cell Disease.

  • Webinar 1

    Project Introduction, presented by Susan Paulukonis and Mary Hulihan.

Centers for Disease Control (CDC)

Sickle Cell Data Collection

Useful in Describing Patterns of Emergency Department Visits by Californians with Sickle Cell Disease (SCD)

Medical care for children and adults living with sickle cell disease (SCD) is often provided in the emergency department (ED) within hospitals or clinics when problems cannot be successfully treated at home or during a doctor’s office visit. How frequently a patient uses the ED may also be related to healthcare system factors, such as lack of access to health care, few or no SCD healthcare experts located nearby, or inadequate or no insurance coverage to pay for medical services. Previous research suggests that between one-half and two-thirds of SCD patients’ ED visits end in a discharge from the ED, called a treat-and-release visit. The remainder result in admission to a hospital or other treatment facility.

About This Study

The purpose of this study was to use data from the Sickle Cell Data Collection (SCDC) program to

  1. Describe patterns of use of the ED for treat-and-release visits by California’s SCD population; and
  2. Compare and contrast these new findings with results of previous studies.

ED and hospital discharge data from 2005-2014 were studied to determine the patterns of ED treat-and-release for people with SCD in California.

Key findings from this report are highlighted below and we invite you to read the scientific summary of the article.

Main Findings
  • Among 4,636 patients with SCD in California, almost 9 in 10 had one or more treat-and-release ED visits during the 10 year study period (2005-2014).
  • The average number of visits each year to the ED for the participants in the study was 2.1 visits.
  • In a single year,
    • About 5 in 10 patients with SCD had no treat-and-release ED visits (No ED use),
    • About 3 in 10 patients had between 1 and 3 visits (Low ED use),
    • About 1 in 10 patients had between 4 and 10 visits (Medium ED use), and
    • About 1 in 30 patients had 11 or more visits (High ED use).
  • Younger adults and older adults had a greater number of ED visits than pediatric patients (patients who were children).

Researchers can study these ED visits to better understand the changes in health care and health policy that might lead to the improvement and extension of life for people with SCD.