Capacity Building Sessions
The current SCDC project, established by the Cooperative Agreement CDC-RFA-DD19-1906, is working to develop SCD surveillance in additional participating states by implementing virtual and in-person capacity-building sessions, fostering in-state and cross-state relationships, and sharing information and knowledge from prior project experience. The virtual capacity sessions are a collaborative effort with CDC and the Georgia and California SCDC programs. The following are summaries of these bi-weekly sessions. To listen to recordings, click hereexternal icon | For more surveillance resources, click here.
May 21, 2020
Session 11: SCD Case Definition
The initial SCD case definition that was used for surveillance was developed during Registry and Surveillance System for Hemoglobinopathies (RuSH). As part of that work, guidance was developed to identify SCD cases based on laboratory results and International Classification of Diseases; both the 9th and 10th revisions) coding found among the administrative billing data.
Georgia’s SCDC team, in partnership with Children’s Healthcare of Atlanta, carried out a study examining various case definitions. Based on the findings from that study, some revisions to the SCDC case definition were made. The study highlighted the trade-offs between sensitivity (the ability to correctly identify those with the disease) and specificity (the ability to correctly identify those without the disease) depending on the case definition selected. For surveillance, the case definition should optimize sensitivity.
May 7, 2020
Session 10: The Evolution of Surveillance
CDC’s state-based SCD surveillance activities were initiated in 2010. Over time, the SCD surveillance work has evolved to include both additional data sources and years of data, compared to when the project first began. As these new data are added, they are linked to the older information to provide a more complete and updated understanding of the SCD population. As states design their SCD surveillance systems, it is helpful to keep the following considerations in mind:
- How will new data be incorporated?
- How often will data be linked?
- Is the system flexible enough to adjust to changes in data sources?
- What are the goals of the surveillance system?
April 16, 2020
Session 9: What’s Really in the Data?
This session presented answers to a sample of questions asked by the capacity-building states, such as:
- What variables do we request?
- How do we answer outside questions about SCD data analysis?
- How do we link one data set to another?
The California and Georgia SCDC teams provided examples of what worked, as well as lessons learned based on their experiences when establishing an SCD surveillance program and analyzing the data.
March 19, 2020
Session 8: Writing a Final Report of Standardized Methods for Implementing SCD Surveillance
The Final Report is a combined effort of all participating states and will include standardized methods for implementing SCD surveillance. Proposed topics include
- SCD surveillance background;
- Data sources;
- Patient identifiers for linkage and data structure;
- Obtaining and transferring data;
- Data linkage;
- Engaging stakeholders and data utilization;
- Costs, resources, and personnel;
- Capacity to collect data over time; and
March 5, 2020
Session 7: Putting Surveillance Data to Work
Surveillance data can be used to improve
- Healthcare practices;
- Infrastructure/workforce development;
- Growth of support systems;
- Understanding and awareness of SCD; and
- Health of those living with SCD.
Maintaining funding and the ability to continue, or sustain, surveillance is an ongoing process. Ongoing steps for sustainability include
- Continually promoting a surveillance program;
- Establishing surveillance with as many collaborators and stakeholders as possible; and
- Using surveillance models and expertise from other disease programs.
February 20, 2020
Session 6: Stakeholder Engagement for Collecting Data for a Rare Disease
When beginning to engage stakeholders for your surveillance (monitoring) effort, it is helpful to
- Recognize that the community of people impacted by sickle cell disease (SCD) has faced many challenges;
- Connect with people and stakeholders who support the sickle cell community to learn about the history of their monitoring programs and the problems they have faced collecting data;
- Discuss possible solutions to the data collection issues that stakeholders have had in the past or are currently having; and
- Build trust and respect with the community of people impacted by SCD and the stakeholders who support this community.
Taking these steps can lay the groundwork for future data collection efforts and allow you to grow your network, obtain funding, and identify and overcome any barriers that may arise.
February 6, 2020
Session 5: Planning for Data Transfer and Storage
Prior to starting sickle cell disease (SCD) surveillance data collection and storage, it is important to establish a case definition. A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance (monitoring).
When planning for data transfer and storage, a program should
- Consider their state’s current resources and capacity to collect data;
- Determine what data exist and are available and what data elements need to be accessed from each data source; and
- Determine software needs for matching and linking data from multiple data sources.
Data security, the process of protecting data from unauthorized access, is of utmost importance; therefore, it is crucial that states have a secure transfer method in place and a Health Insurance Portability and Accountability Act (HIPAA)-compliant secure server for storage. Many methods of data transfer exist, such as secure File Transfer Protocol (FTP), physical transfer, and other subscriber/paid secure transfer servicers (Box, etc.). Also, consider the format of each source to ensure the ability to use or convert data into a useful format or one that your team has the ability to analyze.
December 19, 2019
Session 4: State Agency Engagement and Approval and Data Types
When approaching state agency officials to discuss sickle cell disease (SCD) surveillance (monitoring), SCDC programs may wish to consider first assessing program and agency buy-in with staff to increase their understanding of the project before engaging with legal teams. During these initial meetings, it is important to discuss
- Public health authority, in other words, who is “officially mandated” or responsible to handle public health matters related to SCDC;
- Current state-level data that are already captured;
- Mechanisms through which covered entities (health plans: health insurance companies; health maintenance organizations; employer-sponsored health plans; and government programs) report SCD cases; and
- Institutional review board (IRB) requirements.
Public health data sources that new programs might consider for their surveillance system include
- Newborn screening;
- Vital records;
- Medicaid data;
- Administrative data (hospital discharge and emergency department data); and
- Clinical data (health-related information that is associated with regular patient care or as part of clinical trial program, including electronic health records).
December 5, 2019
Session 3: Establishing a State Surveillance Program
A core surveillance (monitoring) team may consist of many members, such as a principal investigator (PI), data analyst, and a program coordinator. The effort of each member depends on the needs of the project and the experience of the staff. Additional factors may be considered when building/establishing a statewide surveillance system, such as infrastructure, human resources, indirect costs, and other external costs (e.g., data costs, information technology (IT) system/support/storage costs). States developing SCDC surveillance systems should consider who the lead entity is in the state. If the lead entity is not a public health authority, the program might consider other organizations to take lead of the work, such as a:
- Contract organization;
- State Public Health Authority; or
Each option has different associated costs and benefits to consider.
November 21, 2019
Session 2: Improving Health Outcomes for Sickle Cell Disease Through Surveillance
Sickle cell disease (SCD) surveillance (monitoring) data have been used in many ways to improve health outcomes and access to health care. In California, prevalence data were used to inform new legislation, resulting in expanded surveillance and new clinical sites, both of which were reduced years earlier due to budget cuts. The Georgia SCDC program has used its surveillance data for community outreach, scientific papers, fact sheets, and white papers.
November 7, 2019
Session 1: History of Sickle Cell Data Collection, Goal Setting, and Existing Infrastructure in Participating States
Sickle cell disease (SCD) surveillance (monitoring) among CDC and participating states began in 2010 with the Registry and Surveillance System for Hemoglobinopathies (RuSH) project. At the time, California, Florida, Georgia, Michigan, New York, North Carolina, and Pennsylvania worked to identify and collect data on people living with SCD or thalassemia within their respective states. In 2012, California, Georgia, and Mississippi participated in the Public Health Research, Epidemiology, and Hemoglobinopathies (PHRESH) project, in which data collected during RuSH were analyzed and validated and the findings shared. The Sickle Cell Data Collection (SCDC) project began in 2015 with California, followed by Georgia in 2016, to build on previous work. Both states worked to study trends in diagnosis, treatment, and healthcare access of persons with SCD and to share findings with audiences who drive policy and healthcare changes to improve the lives of people living with SCD. The current SCDC project aims to build SCD surveillance capacity in additional states: Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and Virginia. CDC and the SCDC teams from California and Georgia are leading virtual and in-person capacity-building sessions to share their experiences developing and implementing successful state-based SCD surveillance systems. This includes their work in developing collaborations with relevant stakeholders and data stewards in their respective states. In addition, CDC and the California and Georgia teams are providing technical assistance to the seven newly funded states through educational sessions, lessons learned, and prior knowledge.
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 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)