Sickle Cell Data Collection Program Report: Data to Action - Role of SCDC Partners

Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities (CDC/NCBDDD)

CDC/NCBDDD provides technical guidance and oversight for all SCDC activities, fostered by its extensive experience in designing, implementing, and analyzing data from population-based surveillance systems and disease-specific registries. Additionally, CDC/NCBDDD can leverage the knowledge of experts and partnerships with other federal agencies to ensure that SCDC meets the research, public health, and policy needs of the larger community. CDC/NCBDDD is responsible for the control of the content, resources, materials, and associated components of the project.

Participating States

SCDC funds two programs to carry out its surveillance program: Public Health Institute’s ‘Tracking California’ program and Georgia State University’s Georgia Health Policy Center (GHPC). These entities have the public health authority to legally access individual-level demographic, clinical, and healthcare visits information from a wide range of sources. They are responsible for collecting, analyzing, and housing the data. Tracking California and GHPC also convene statewide, multidisciplinary partnerships that help guide the focus, content, and information dissemination for the project.

Sickle Cell Data Collection - California
Sickle Cell Data Collection - California

SCDC funds two programs to carry out its surveillance program: Public Health Institute’s ‘Tracking California’ program and Georgia State University’s Georgia Health Policy Center (GHPC).

CDC Foundation

CDC Foundation administers the memorandum of agreement with CDC/NCBDDD that defines the scope, responsibilities, and budget for activities related to this project. CDC Foundation has more than 22 years of experience successfully administering public-private partnerships across sectors on behalf of CDC’s mission and priorities.

Funding Partners

CDC Foundation currently receives funding for SCDC from four partners: Bioverativ (spin off of Biogen), Global Blood Therapeutics, Pfizer, Inc., and Doris Duke Charitable Foundation. Support from partners provides funding for field staff, partnerships with California and Georgia, and project-related travel and meetings.

Page last reviewed: September 6, 2018