SCDC Capacity Building Sessions

Overview

CDC funded and collaborated with two sickle cell data collection (SCDC) program sites—in California and Georgia—to create the 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. While there may be variation across programs in resources, data source availability, and organizational processes for data linkage, 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
• 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, linked below.

Phase 1: Develop multi-stakeholder collaborations

• History of Sickle Cell Data Collection
• Establish a State Surveillance Program
• Stakeholder Engagement
• State Agency Engagement

Phase 2: Build data infrastructure

• Data Nuts and Bolts
• Data Transfer and Storage
• SCDC Case Definition
• The Evolution of Surveillance Data
• What's Really in the Data?
• Where Are the Data Holes?

Phase 3: Share data findings

• Put Surveillance Data to Work
• Improve Health Outcomes for Sickle Cell Disease through Surveillance

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

National Center for Health Statistics (NCHS) Data Linkage

Surveillance, Epidemiology, and End Results (SEER) Program—Medicare: How the SEER & Medicare Data Are Linked

Summary of State Laws that Facilitate Data Sharing among State Agencies

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

Writing a Data Management & Sharing Plan