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Sickle Cell Data Collection (SCDC)

California's Sickle Cell Data Collection (SCDC) Program aims to improve access to quality healthcare, reduce health disparities, and increase awareness of the disease by providing data, conducting analyses, and communicating information to SCD partners throughout the state.

7,000 people in California living with sickle cell disease (SCD) face barriers getting quality care, a lack of treatment options, and a lack of public and clinical awareness about their disease.

Public Health Surveillance for SCD did not exist until 2010 - prior, there was no clinical data system that informed us of what kind of care people living with SCD were getting, who was caring for people with SCD, and what was the health and mortality risks of those living with SCD.

In 2010, the CDC began funding and supporting California and other states to develop systems to help answer these questions.

California's SCDC program is one of 15 states funded by the Center for Disease Control's National Sickle Cell Data Collection (SCDC) Program.

Multi-Disciplinary Team

The CA SCDC program engages with a variety of stakeholders to identify priorities, ensuring the information we collect, and produce is valuable. This way, our partners can use the data to enhance policies, healthcare approaches, and treatments for individuals with SCD. 

Data Stewards

The CA SCDC program works with the California Department of Public Health, the California Department of Health Care Access & Information, the Department of Health Care Services, and Clinic Partners throughout the state to to collect data on the SCD population.

Quarterly Webinars

The CA SCDC program holds quarterly webinars that are free and open to the public. An archive of recordings and slides can be found on the California Sickle Cell Resources website.

Key Project Information

Project Time Period

2023 - 2028

Project Funder

The Centers for Disease Control and Prevention (CDC), DD-23-0002 Sickle Cell Data Collection Program, Award Number NU58DD000039

Project Partners

  • Clinic Partners (previous & current): 

    • University of California (UC) Irvine Medical Center 
    • The Center for Inherited Blood Disorders 
    • Zuckerberg San Francisco General Hospital & Trauma Center 
    • Rady 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 and San Francisco campuses) 
    • Lucille Packard Children’s Hospital at Stanford 
    • Sickle Cell Disease Foundation 
    • Children’s Hospital Orange County


  • Sickle Cell Community Based Organizations: 

    • Sickle Cell Anemia Awareness of San Francisco (SCAASF) 
    • Cayenne Wellness Center and Children’s Foundation 
    • Sickle Cell Disease Foundation (SCDF)


  • Networking California for Sickle Cell Care


We also work with a variety of organizations around the state to gather data and determine how best to use it. 

Project Contact

For more information, please contact

Join our email list for webinar announcements

Project Materials

Partner Program Materials

Project Publications

  1. National Quality Indicators in Pediatric Sickle Cell Anemia [2024] Ashaunta Anderson, Wendy Mack, Sophia Horiuchi, Susan Paulukonis, Mei Zhou, Angela Snyder, Jason Doctor, Michele Kipke, Thomas Coates, Gary Freed
  2. Case Ascertainment of Sickle Cell Disease Using Surveillance or Single Administrative Database Case Definitions [2024] Sarah Reeves, Sophia Horiuchi, Mei Zhou, Susan Paulukonis, Angela Snyder, Shondelle Wilson-Frederick, Mary Hulihan
  3. Common data model for sickle cell disease surveillance: considerations and implications [2023] Matthew Smeltzer, Sarah Reeves, William Cooper, Brandon Attell, John Strouse, Clifford Takemoto, Julie Kanter, Krista Latta, Allison Plaxco, Robert Davis, Daniel Hatch, Camila Reyes, Kevin Dombowski, Angela Snyder, Susan Paulukonis, Ashima Singh, Mariam Kayle
  4. COVID-19 infection and outcomes in Newborn Screening Cohorts of Sickle Cell Trait and Sickle Cell Disease in Michigan and Georgia [2023] Susan Paulukonis, Angela Snyder, Matthew Smeltzer, Ankit Sutaria, Isabel Hurden, Krista Latta, Swathi Chennuri, Elliott Vichinsky, Sarah Reeves
  5. Sickle Cell Disease among Latinx in California [2022] Jhaqueline Valle, Judith Baker, Daniel Madrigal, Juana Ferrerosa, Susan Paulukonis
  6. Surveillance for Sickle Cell Disease - Sickle Cell Data Collection Program, Two States, 2004 - 2018 [2022] Angela Snyder, Sangeetha Lashmanan, Mary Hulihan, Susan Paulukonis, Mei Zhou, Sophia Horiuchi, Karon Abe, Shammara Pope, Laura Schieve
  7. Hematologist encounters among patients who have sickle cell disease [2022] Sophia Horiuchi, Mei Zhou, Angela Snyder, Susan Paulukonis
  8. Improving Outcomes for Patients with Sickle Cell Disease in the United States: Making the Case for More Resources, Surveillance, and Longitudinal Data [2021] Julie Kanter, Emily Meier, Jane Hankins, Susan Paulukonis, Angela Snyder
  9. Concurrent use of hydroyurea and deferasirox in Californians with Sickle Cell Disease [2021] Trisha Wong, Jhaqueline Valle, Susan Paulukonis
  10. Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005 - 2016 [2020] Aika Aluc, Mei Zhou, Susan Paulukonis, Angela Snyder, David Wong, Mary Hulihan
  11. Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease [2020] Mariam Kayle, Jhaqueline Valle, Susan Paulukonis, Jane Holl, Paula Tanabe, Dustin French, Ravi Garg, Robert Liem, Sherif Badway, Marsha Treadwell
  12. Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach [2020] Emily Johnston, Oyebimpe Adesina, Elysia Alvarez, Heather Amato, Susan Paulukonis, Ashley Nichols, Lisa Chamberlain, Smita Bhatia
  13. Increased risk of Leukemia among sickle cell disease patients in California [2017] Ann Brunson, Theresa Keegan, Heejung Bang, Anjlee Mahajan, Susan Paulukonis, Ted Wun
  14. The Accuracy of Hospital ICD-9-CM Codes for Determining Sickle Cell Disease Genotype [2017] Angela Snyder, Peter Lane, Mei Zhou, Susan Paulukonis, Mary Hulihan
  15. Emergency department utilization by Californians with sickle cell disease, 2005 - 2014 [2017] Susan Paulukonis, Lisa Feuchtbaum, Thomas Coates, Lynne Neumayr, Marsha Treadwall, Elliott Vichinsky, Mary Hulihan
  16. Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 - 2008 [2016] Susan Paulukonis, James Eckman, Angela Snyder, Ward Hagar, Lisa Feuchtbaum, Mei Zhou, Althea Grant, Mary Hulihan

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