Capacity Building Sessions
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 presentationsexternal icon.
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 Measurementexternal icon
Data Governance: Ensuring Trust and Managing Risksexternal icon
Data Sharing Strategies to Advance Health Equityexternal icon
Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia pdf icon[295 KB/25 pages]external icon
National Center for Health Statistics (NCHS) Data Linkage
Surveillance, Epidemiology, and End Results (SEER) Program—Medicare: How the SEER and Medicare Data Are Linkedexternal iconSummary of State Laws That Facilitate Data Sharing Among State Agencies pdf icon[743 KB/4 pages]external icon
Data Policy
CFR* 45 CFR 164—Security and Privacy (HIPAA** Survival Guide)external icon
Federal Policy for the Protection of Human Subjects (‘Common Rule’)external icon
HIPAA** Privacy Rule and Public Health
Data Use Agreements
Data Sharing: Creating Agreements pdf icon[849 KB/21 pages]external icon
Key Elements to Consider in Preparing a Data Sharing Plan Under NIH*** Extramural Support pdf icon[31.7 KB/3 pages]external icon
* Code of Federal Regulations
** Health Insurance Portability and Accountability Act (HIPAA)
*** National Institutes of Health (NIH)
