The Bloodline Newsletter: April 2022

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).

April 2022 Issue

Communications Corner

Caring for Common Complications of Sickle Cell Disease
  • CDC’s “Steps to better health for people with sickle cell disease toolkit”, which includes downloadable fact sheets and social media resources about the common complications of SCD and how people living with SCD can manage their health, is now available in Spanish and French.
  • SCDC Colorado conducted a short assessment to SCD stakeholders, including those living with SCD and their family members, healthcare providers, advocates, community-based organizations (CBOs), and policy makers. The purpose of the survey is to assess baseline knowledge about the epidemiology and healthcare utilization patterns of SCD. SCDC Colorado plans to administer the survey annually to guide communication, dissemination, and education efforts. Click hereexternal icon to complete the assessment if you live in Colorado.
  • SCDC California worked with the California Department of Health’s Genetic Disease Screening Program and Sickle Cell Anemia Awareness San Francisco to send out a short survey in March 2022 to hematologists in the state about their care of people living with SCD. If you live in California and want more information on how healthcare providers can provide important input to the state, please contact info@TrackingCalifornia.org.
  • SCDC Michigan sent out its most recent issue of the Multidisciplinary Team Newsletter in March 2022. The newsletter includes updates on data, publications, communications activities, and more. To subscribe, email Mary Robinson: RobinsonM31@michigan.gov.

Trainings & Webinars

Up-to-Data

SCDC Georgia responded to requests for SCDC surveillance data:

  • An SCD CBO requested aggregate data of COVID-19 cases within the SCD population in Georgia. SCDC Georgia worked with the Georgia Department of Public Health (GDPH) and responded to this request. The CBO also requested results of a provider needs assessment [PDF – 2 pages]external icon performed in 2013 regarding access to appropriate information for patients and providers on hydroxyurea, immunizations, and transcranial doppler screening.
  • A clinical provider requested SCDC data on the percentage of ED and in-patient visits for Children’s Healthcare of Atlanta (CHOA) pediatric SCD patients in 14 metro counties between 2017 and 2019. This data will help providers understand how many pediatric SCD patients are captured by the CHOA database.

Presentations & Meetings

  • Stakeholders from SCDC Georgia provided testimony to the Georgia Sickle Cell Anemia Study Committee during Summer and Fall of 2021. In December 2021, the Georgia State Senate released “The final report of the Senate Study Committee on sickle cell anemia pdf icon[PDF – 7 pages]external icon.”
  • SCDC Georgia hosted its Stakeholder Advisory meeting on February 27, 2022, with participation from clinicians, CBOs, staff from the GDPH, and public health experts. The group discussed data, research, and policy priorities including future analyses on topics such as telemedicine use by people with SCD before/during COVID-19 and exploring CDC’s Social Vulnerability Index within the Georgia SCD population.
  • CDC held the SCDC program’s quarterly meeting on March 8, 2022. The meeting covered policy, communications, and CBO workgroup updates; the Social Vulnerability Index and SCDC; and publication overviews.
  • CDC presented an overview of the SCDC program to the U.S. Department of Health and Human Services (HHS) SCD Interagency Workgroup on April 6, 2022.
  • CDC presented an overview of the SCDC program to Adm. Rachel Levine, Assistant Secretary for Health for HHS, during her visit to the Atlanta campus on April 13, 2022.

In The News

This section is shared to provide awareness of articles on SCD currently presented in the media. Linking to a non-federal site does not constitute an endorsement by CDC or any of its employees of the sponsors, information, and products presented on the site.

Announcements

The Michigan Department of Health and Human Services:

Contact

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

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