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

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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 programs to carry out its surveillance activities. These programs 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. The programs also convene statewide, multidisciplinary partnerships that help guide the focus, content, and information dissemination of the project.

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 has worked with multiple partners to fund components of this project: Sanofi (formerly Biogen/Bioverativ), Global Blood Therapeutics, Pfizer, Inc., Doris Duke Charitable Foundation, and Novartis Foundation. Support from partners provides funding for field staff, partnerships with SCDC states, and project-related travel and meetings.