Our Data
About the Data We Collect
Data that we use has already been collected and validated by data partners.
Data are governed by data use agreements that determine whether or not data can be shared, what is shared, and how it is shared.
Only aggregated data about groups of people (not individual-level data) that meet our partners’ privacy guidelines can be shared.
Data Providers
- California Department of Health Care Access & Information
- California Department of Public Health
- Clinic Partners
- Department of Health Care Services
Our Clinic Partners include:
- University of California (UC) Irvine Medical Center
- The Center for Inherited Blood Disorders
- Zuckerberg San Francisco General Hospital & Trauma Center
- Ready Children’s Hospital/UC San Diego School of Medicine
- Children’s Hospital Los Angeles
- Valley Children’s Hospital
- UC Davis Medical Center
- UC San Francisco Benioff Children’s Hospital Oakland
- Lucille Packard Children’s Hospital at Stanford
- Sickle Cell Disease Foundation
- Children’s Hospital Orange County
What We Do
We connect information from hospitals, clinics, and state health systems to better understand sickle cell disease in California. By linking existing data sources, we create a more complete view of the sickle cell population – from newborn screening through adulthood.
These linked data allow us to answer important questions about persons living with Sickle Cell Disease and their:
- population demographics and prevalence
- life expectancy
- health care utilization and accessibility
- preventive care and health outcomes
- additional needs
