The Bloodline Newsletter: Spring 2020

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 2020

Communications Corner

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Trainings and Webinars


SCDC Georgia responded to data requests from

  • Boston University School of Medicine regarding the link between timing of outpatient visits and hospital readmissions following an ED visit for SCD.
  • University of California, Davis regarding the use of hydroxyurea and young adult mortality with SCD.

SCDC California

  • Responded to data requests from Networking California for Sickle Cell Care to support siting new clinics around the state and determining the relationship between types and frequencies of outpatient visits and prescriptions filled.
  • Is developing county-specific data to show how many people meeting the SCDC case definition are in key counties throughout the state and where they live. These data will help the newly established network of Community Health Workers with outreach efforts.
  • Shared regional data with Sickle Cell Anemia Awareness San Francisco for its April town hall meeting on COVID-19.

Presentations and Meetings

  • On May 19, 2020, SCDC California’s Susan Paulukonis met with the unaffiliated patient team of the Sickle Cell Disease Implementation Consortium, a multistate effort funded by the National Heart, Lung, and Blood Institute to improve access to care and outcomes for adolescents and adults with SCD. The group discussed how surveillance could inform identification of unaffiliated patients and evaluation of interventions to bring them into comprehensive/quality care.
  • On April 16, 2020, CDC’s Mary Hulihan provided two SCDC overviews during events convened by Cincinnati Children’s Hospital Medical Center: The morning’s presentation was for their annual Hemoglobinopathy Counselor Training Course and the afternoon’s presentation was for their Sickle Treatment & Outcomes Research in the Midwest TeleECHO (Extension for Community Healthcare Outcomes) series.
  • On April 6, 2020, several members of CDC’s Division of Blood Disorders participated in the Women’s SCD Health Workshop, hosted by The Foundation for Women and Girls with Blood Disorders. A significant topic of discussion was how SCDC data could be analyzed to better understand the health and health care of women with SCD.
  • On April 1, 2020, SCDC Georgia convened data providers to discuss ongoing surveillance methods, the uses and needs of these methods, and potential new datasets that can be linked to the state’s SCDC data. Participants included pediatric and adult sickle cell providers from the four participating clinical sites; department of public health newborn screening epidemiology and program staff; newborn screening follow-up nurses; and project staff.
SCDC Georgia link sequence graphics

SCDC Georgia presented their data linkage sequence during their stakeholder convening on April 1, 2020.

  • SCDC Georgia serves on the Minority Blood Donation workgroup for the national chapter of Sickle Cell Disease Coalition, and shares research findings and products about diversifying the blood supply for people with hemoglobin disorders in need of transfusions on the workgroup’s monthly calls. On the April 1, 2020 call, SCDC Georgia shared clinicians’ feedback on pandemic-related concerns about the blood supply.
  • On March 11, 2020, Networking California for Sickle Cell Care brought together a group of people interested in coordinating data collection, sharing, and analysis in California. SCDC California presented new data, including the number of patients in the state and payer information; plans were drafted to conduct analyses on cost of care and transition effectiveness.
  • Five (of nine) site visits with recipients of the Capacity Building for Sickle Cell Surveillance (DD19-1906) grant were completed:
    • North Carolina (March 12)
    • Georgia (April 1)
    • Indiana (April 9)
    • Tennessee (May 14)
    • Alabama (May 22)

    Although each of these site visits were held virtually, both the recipients and CDC benefited from presentations by state partners; in-depth discussions about the recipients’ SCD surveillance infrastructure; and brainstorming about future activities, funding, and sustainability of the work. The remaining site visits will take place this summer.

In the News


Webinar: “End of life healthcare utilization for those with SCD and the potential need for a palliative care model”

Date/Time: Wednesday, July 1, 2020, 10:30– 12:00 p.m. PDT.

Presenters: Emily E. Johnston, MD, MS and Oyebimpe O. Adesina, MD will discuss the findings of their recently published article, “Acute care utilization at end of life in sickle cell disease: Highlighting the need for a palliative approach.” Register here.


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

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