Capacity Building Sessions

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CDC, together with members of the organizations that received funding for CDC-RFA-DD19-1906, created the Sickle Cell Data Collection (SCDC) Capacity Building toolkit. The toolkit is a collection of resources to help programs build the foundation for an SCD surveillance system in their state.  Programs will differ in methods, personnel, resources, data sources, and output, but the core components of a successful SCD surveillance system are the same.

The SCDC Guiding Framework consists of three phases:

  • Phase 1: Developing multi-stakeholder collaborations;
  • Phase 2: Building data infrastructure; and
  • Phase 3: Sharing data findings with key stakeholders.

A series of capacity-building sessions/presentations were developed to provide a more in-depth look at the phases of the Guiding Framework. For more information, view slides from these presentations.

Phase 1: Develop Multi-Stakeholder Collaborations

  • History of Sickle Cell Data Collection (11.07.19, session 1)
  • Establish a State Surveillance Program (12.05.19, session 3)
  • Stakeholder Engagement (02.20.20, session 6)
  • State Agency Engagement (12.19.19, session 4)

Phase 2: Build Data Infrastructure

  • Data Nuts and Bolts (06.04.20, session 12)
  • Data Transfer and Storage (02.06.20, session 5)
  • SCDC Case Definition (05.21.20, session 11)
  • The Evolution of Surveillance Data (05.07.20, session 10)
  • What’s Really in the Data? (04.16.20, session 9)
  • Where Are the Data Holes? (06.18.20, session 13)

Phase 3: Share Data Findings

  • Annual Data Reports (08.06.20, session 14)
  • Put Surveillance Data to Work (03.05.20, session 7)
  • Improve Health Outcomes for Sickle Cell Disease through Surveillance (11.21.29, session 2)

Surveillance Resources

Data Linkage

Center for Medicaid and CHIP (Children’s Health Insurance Program) Services: Data and Measurement
Data Governance: Ensuring Trust and Managing Risks
Data Sharing Strategies to Advance Health Equity
Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia [295 KB/25 pages]
National Center for Health Statistics (NCHS) Data Linkage
Surveillance, Epidemiology, and End Results (SEER) Program—Medicare: How the SEER and Medicare Data Are LinkedSummary of State Laws That Facilitate Data Sharing Among State Agencies [743 KB/4 pages]

Data Policy

CFR* 45 CFR 164—Security and Privacy (HIPAA** Survival Guide)
Federal Policy for the Protection of Human Subjects (‘Common Rule’)
HIPAA** Privacy Rule and Public Health

Data Use Agreements

Data Sharing: Creating Agreements [849 KB/21 pages]
Key Elements to Consider in Preparing a Data Sharing Plan Under NIH*** Extramural Support [31.7 KB/3 pages]

 

* Code of Federal Regulations
** Health Insurance Portability and Accountability Act (HIPAA)
*** National Institutes of Health (NIH)