The Bloodline Newsletter: Spring 2019

The Bloodline. Sickle Cell Data Collection (SCDC) Program Quarterly Newsletter

Mission: To improve quality of life, life expectancy, and health among people living with sickle cell disease (SCD).

Spring 2019

Communications Corner

Understanding Sickle Cell Disease fact sheet thumbnail

Recent Publications

SCDC Georgia published, “Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Disease” in Public Health Reports.


  • SCDC Georgia received data for the first time from Memorial Children’s Hospital in Savannah, Georgia, and new data from the Georgia Medicaid program. Additionally, newborn screening data from 2004 through 2016 was geocoded by address to enable mapping and GIS analysis.
  • SCDC Georgia responded to requests for SCDC data from a variety of sources, including:
    • Three graduate students conducting research projects.
    • A research epidemiologist at Children’s Healthcare of Atlanta, who needed data for an abstract, “Sharing Data, Sharing Care: A Public Health-Healthcare Partnership for Improved Sickle Cell Disease Research and Surveillance Using a Population-based Clinical Database,” which was accepted for presentation at the Council for State and Territorial Epidemiologists conference.
    • A regional SCD advocacy group interested in updated incidence data by year and diagnosis for Muscogee County, Georgia.
  • SCDC California has clinical case report data from new partners, Children’s Hospital of Orange County, University of California San Diego/Rady Children’s Hospital-San Diego, and Stanford University/Lucille Packard Children’s Hospital, and is expecting four additional new data files this spring from other clinical partners.
  • SCDC California responded to requests for SCDC data from a variety of sources, including:
    • A team of researchers working on a grant proposal to better understand the links between SCD and cancer.
    • Community-based organizations that are developing policy messages on Hispanic/Latinx people living with SCD and access-to-care challenges for adults in Southern California.
  • SCDC data were used to develop an abstract, “Newborn Screening Data for Sickle Cell Disease in California and Georgia, 2004—2016: Implications for Health Interventions,” which was submitted to the Foundation for Sickle Cell Disease Research’s 2019 Sickle Cell Disease Research and Educational Symposium.

Presentations and Meetings

  • SCDC California’s Susan Paulukonis is serving on an ad-hoc committee formed by the National Academies of Sciences, Engineering, and Medicine (NASEM) to develop a strategic plan and blueprint for addressing SCD in the United States. This project was commissioned by the Department of Health and Human Services’ Office of Minority Health; the committee’s charge and roster are available here.
  • SCDC Georgia’s Angie Snyder spoke at a panel discussion titled, “How Public Policy Can Help Shape the Future of Sickle Cell Disease,” held at the National Newspaper Publishers Association’s Black Press Week in Washington, D.C.
  • An Emory University physician shared SCDC data in a joint grand rounds presentation on transfusion practices in sickle cell and thalassemia at Columbus Regional Hospital. The physician contextualized the talk with 10 years of SCDC data including healthcare utilization for patients with SCD who received care from that hospital.
  • SCDC’s Mary Hulihan presented “Sickle Cell Disease: Epidemiology, Surveillance, and Research in the United States,” an overview of the SCDC program, and included ideas for future expansion of this work, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” during the first public session of NASEM’s committee, held February 21, 2019.
  • Mary Hulihan attended “Coffee with the Director” on April 25, 2019, where she informed Dr. Robert Redfield, Director of the CDC, about the SCDC program and its goals.
  • SCDC data were used to inform Mary Hulihan’s keynote presentation during the Emergency Department Sickle Cell Coalition’s summit on May 9, 2019.
    Coffee with the director

    Mary Hulihan (far right) attends "Coffee with the Director"

In the News


  • California and Georgia aggregate 2005 SCDC data were made available in February 2019, including patient demographics, hospitalizations, and emergency department visits. California’s 2010—2016 SCDC data will be made available here in June 2019.
  • CDC issued a clarification on its Guideline for Prescribing Opioids for Chronic Pain in patients with SCD. Read the commentary, No Shortcuts to Safer Opioid Prescribing, which encourages implementation of the Guideline to be consistent with its recommendations.
  • A new notice of funding opportunity (NOFO) forecast: Capacity Building for Sickle Cell Surveillance (DD19-1906). This NOFO allows for new states to build capacity for SCDC program implementation. Click “Subscribe” on NOFO page to receive updates about this funding opportunity.


For any questions about the SCDC program, contact Mary Hulihan ( or Mandip Kaur (

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