Sickle Cell Disease
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Sickle Cell Projects

Sickle Cell Data Collection program

The California Sickle Cell Data Collection (SCDC) program was funded by the CDC Foundation and partners Pfizer Inc., Sanofi, Global Blood Therapeutics, and the Doris Duke Charitable Foundation from April 2015 through July 2020. The SCDC program is a partnership with and overseen by the Centers for Disease Control and Prevention. This funding forms the foundation of our public health surveillance work in SCD, supporting data collection and linkage as well as analysis, publication and other dissemination, and work with stakeholders to make our data actionable. California has submitted a proposal for continued funding and will know more in September, 2020.

Networking Sickle Cell Care for Californians 

The California State Legislature approved funding for Networking Sickle Cell Care for Californians (NCSCC) and the establishment of a network of sickle cell disease centers in the local health jurisdictions of Alameda, Fresno, Kern, Los Angeles, Sacramento, San Bernardino, and San Diego to provide access to specialty care and improve quality of care for adults with sickle cell disease; support workforce expansion for coordinated health services; conduct surveillance to monitor disease incidence, prevalence, and other metrics; create a public awareness campaign; and provide fiscal oversight of the resources. Tracking California is responsible for much of the surveillance component of this work, which is currently funded through June, 2022. This funding supports increased data collection (new data sources, new years of data), increased staff time for analyses and dissemination, increased health education capacity, and increased work with  stakeholders to make the data useful and drive changes in outcomes for those with SCD. Find more information about all of the programs funded by the state of California under the NCSCC umbrella at the link above. 

Sickle Cell Trait/NHLBI grant 

The National Heart, Lung, and Blood Institute (National Institutes of Health) awarded Tracking California funds in 2020 to collaborate with the California Department of Public Health's California Biobank Program to examine whether there is increased risk of mortality among children and young adults who carry sickle cell trait, the carrier status for SCD. The funds support data linkage between newborn screening cases with and without sickle cell trait and vital records death files, as well as secondary linkage to hospital discharge data to understand the causes of death among those who have died in the cohorts. Our team is eager to produce one or more publications on the results and share with stakeholders -- funding goes through late winter, 2022.

Capacity Building for Sickle Cell Disease Surveillance

The Centers for Disease Control and Prevention awarded to Tracking California and partners Georgia Health Policy Center a one-year grant to provide training and technical assistance to other states that want to conduct SCD surveillance. The teams meet twice monthly in virtual training sessions, and are working together to create documentation and other materials that will help future interested states to develop such systems. This funding continues through September, 2020. Find more information about the Capacity Building for Sickle Cell Disease Surveillance program here.