The Sickle Cell Data Collection (SCDC) program collects information on health status for patients living with sickle cell disease (SCD). The program was developed by the Centers for Disease Control and Prevention (CDC) Foundation in collaboration with the CDC Division of Blood Disorders, the California Rare Disease Surveillance Program, the Georgia Health Policy Center, Pfizer Inc., Global Blood Therapeutics (GBT), Sanofi, and the Doris Duke Charitable Foundation. It is the first program to collect population-based data from multiple sources over an extended number of years. The SCDC program was built on previous surveillance programs from CDC and the National Heart, Lung, and Blood Institute called the Public Health Research, Epidemiology, and Surveillance in Hemoglobinopathies and the Registry and Surveillance System for Hemoglobinopathies.
As of September 2019, only the states of California and Georgia participate in the SCDC program. California’s program is called the Public Health Institute’s Tracking California program, and Georgia’s program is called Georgia State University’s Georgia Health Policy Center. Together, they form the SCDC program.
1 CDC (Centers for Disease Control and Prevention). 2020. Sickle Cell Data Collection (SCDC) program. https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc.html (accessed March 16, 2020).
Because there are no federal resources able to fund a national surveillance system, the program is funded through a partnership with the CDC Foundation. The CDC Foundation receives its funding support from the following partners: Global Blood Therapeutics, Pfizer Inc., and the Doris Duke Charitable Foundation. Funding supports field staff, partnerships between the states of California and Georgia, and any meetings or project-related travel. The program intends to expand to additional states as resources become available.
PROGRAM PURPOSE AND GOALS
The purpose of the SCDC program is to help understand where people with SCD live in the United States and provide resources for patients to locate the nearest care providers and facilities. The overall goal of the program is to improve the quality of life and life expectancy within the SCD population.
DATA COLLECTION AND USE
Data are collected through newborn screening records, administrative datasets (e.g., hospital discharge, emergency department, and Medicaid), death records, and medical charts. The collected data are used to improve public policy and study long-term trends that may appear in diagnosis, treatment, and health care access within the United States.
PATIENT AND PUBLIC ENGAGEMENT
The SCDC program engages patients and the public by sharing all findings with patients and patient advocates, public health organizations, SCD community organizations, providers, health care administrators, pharmaceutical companies, and policy makers. In addition, the program gives patients the educational resources necessary to make sound decisions about their care. Some educational resources include videos detailing stories of individuals living with SCD, infographics, blog articles, fact sheets, social media content, and quarterly webinars of experts discussing the most recent information regarding SCD. The resources provided by the SCDC program allow patients to properly self-advocate, stay in communication with the larger SCD community, and remain current on recent SCD research findings.
Because of extensive data collection, the SCDC program successfully identifies gaps in the areas of diagnosis, treatment, and health care status for SCD patients and the medical community.
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