Children & Families
Louisiana Sickle Cell Disease Registry

Louisiana Sickle Cell Disease Registry

The Louisiana Sickle Cell Disease Registry (also known as the Skylar-Cooper Database) is a new public health monitoring system in Louisiana. The aim of the Louisiana Sickle Cell Disease Registry is to provide the public, healthcare providers and policy makers with summary information about people living in Louisiana with sickle cell disease as well as information about their health outcomes. In time, the Registry will have comprehensive population estimates and illustrate long-term trends in diagnosis, treatment and health care access. Information like this serves as a powerful tool to inform state policy and supports efforts to improve the quality and accessibility of care for individuals living with sickle cell disease and their families.

The Louisiana Sickle Cell Disease Registry was authorized by Act No. 647 of the 2022 Regular Session of the Louisiana Legislature. It is managed by the Louisiana Department of Public Health, Office of Public Health, Bureau of Family Health in collaboration with the Office of Public Health, Bureau of Health Informatics.

Development of the Louisiana Sickle Cell Disease Registry

Preparation for a sickle cell disease registry in Louisiana has been informed by the elements outlined in the Centers for Disease Control and Prevention (CDC) Guiding Framework for Setting Up a Sickle Cell Disease Surveillance System. The first step in the framework and in Louisiana was to get input from public health experts, clinicians, advocates and people with lived experience.

In 2022 and 2023, the Office of Public Health convened a multidisciplinary team to guide the direction of what information should be included in the Registry and how data from the Registry should be used. Input was sought through partners such as the Louisiana Sickle Cell Commission and the general public. This process resulted in a roadmap of steps to take in developing the registry (see Louisiana Sickle Cell Disease Registry: Report on Preliminary Findings and Recommendations and Establishment of a Sickle Cell Registry in Louisiana: Feedback on Preliminary Recommendations - June 2023).

Over the past year, the Office of Public Health has worked to identify information about sickle cell diagnoses and health-care service information available through the State's healthcare systems. The main sources of data informing the Registry are outlined below. The Office of Public Health has begun to integrate data from those systems into the Louisiana Sickle Cell Disease Registry. The first analyses from the newly developing registry will be published in January 2025 and will focus on hospital-related care episodes and newborn screening. By the end of 2025, the Office of Public Health expects to have integrated data into the Registry from other sources, expanding the types of information available through the Registry.

Next steps:

Assessing and Preparing Data: Data from health information systems already accessible to public health are being integrated into the Registry.
- Status: ongoing. Learn more under Registry Data Sources.
Collecting Data from Identified Providers: Data from health care providers and health systems will be used to ensure the Registry includes all individuals in Louisiana diagnosed with sickle cell disease.
- Status: planning phase. The Office of Public Health is creating a process and requirements for collecting data with an anticipated rollout in 2025.
Analyzing Data Sets from Each Source: Data analysis is being performed to identify data limitations and to learn more about what data sets can tell us about people living with sickle cell disease.
- Status: ongoing. Data will be published under Data Analysis Findings.
Linking and Analyzing Public Health Data Sets: Data sets are being analyzed and linked to provide actionable information about people living with sickle cell disease in Louisiana.
- Status: planning phase. The Office of Public Health is preparing data from multiple sources. Once the data is ready, the Office of Public Health will begin link data sets and analyzing those linked sets. The anticipated timeline to begin linking and analyzing linked data sets is in late 2025.
Share Data: The website will be enhanced periodically to share additional visualizations.
- Status: planning phase. Web content will include analyses of data from available and curated data sources and new visualizations will be prepared on a quarterly basis.

Registry Data Sources

The Louisiana Sickle Cell Disease Registry will contain data from multiple state-wide data sources including newborn screening records, death certificates, emergency department and hospital discharge records, and other administrative and clinical databases. Over time, the Registry will have the capacity to link these data sets to implement a high-quality, state-wide, population-based sickle cell disease surveillance program for Louisiana.

Hospitalization Data

Hospitalization data from the Louisiana Hospital Inpatient Discharge Database is reported to the Office of Public Health for inclusion in the Louisiana Sickle Cell Disease Registry. The data contains claims information and covers approximately 90% of acute care hospitals in the state. It includes inpatient hospital data from licensed state hospitals, representing people with any admission or discharge with a sickle cell diagnosis listed as the admitting, principle or secondary diagnosis on the claim.

Data from Other Sources

Additional data sources being assessed for inclusion in the Louisiana Sickle Cell Disease Registry are:

Louisiana Vital Records Information (e.g., death and births among individuals with sickle cell disease)
Provider Reporting of Sickle Cell Disease Patients
Newborn Screening Data from the Louisiana Newborn Screening Program
Medicaid Claims Data from Louisiana Medicaid
Emergency Department Admissions, Discharge and Transfer Data from the Louisiana Hospital Association

Data Analysis Findings

As part of the development of the Louisiana Sickle Cell Disease Registry, data sets from each source are assessed for quality and completeness to ascertain what each data set tells us about people living with sickle cell disease and to determine what data linkages need to be made to other data sets. The results of this assessment can help provide a more complete picture of the health status of the population of people living with sickle cell disease in Louisiana.

Hospitalizations in 2023

The hospitalization data below includes people who were hospitalized in Louisiana in 2023 who had a diagnosis of sickle cell disease in their hospitalization record. The map shows where people lived at the time of their hospitalization, and locations of sickle cell disease clinics and regional sickle cell foundations that provide education and support for people with sickle cell disease and their families. The graphs show the race, age and gender of people living with sickle cell disease who were hospitalized.

Data Requests

The Louisiana Sickle Cell Disease Registry is a public resource managed by the Office of Public Health. Policymakers, health scientists, clinicians and community partners can request aggregate reports. These reports can be used to inform agency reports, quality improvement initiatives, educational materials, grant applications and peer-reviewed publications.

It is important to the Louisiana Department of Health that individual personal privacy is maintained. As such, all individually identifiable information is removed from the final data provided to requestors. Data is only shared in aggregate form, meaning that it will contain population-level information to ensure patient confidentiality is maintained.

The Office of Public Health will review all requests, assessing the following:

The scope of the request and alignment with current capacity
Alignment with the goals of the Louisiana Sickle Cell Disease Registry
The number of requests received and available resources
Approval from the Office of Public Health

Additionally, restrictions and limitations on sharing can vary by data source. For example, vital records data requests require additional approvals.

Making a Data Request

The Office of Public Health is requesting a consultation between the requestor and Bureau of Family Health team members for all potential data requests to ensure the nature of the request. To schedule a consultation, a request can be mailed to MCHData@la.gov. During the consultation, the team will work with the requestor to understand the goal of the request and determine if the data in the registry is able to meet the intent of the request and the timeline for completing the analysis.

More Information about Sickle Cell Disease

Learn more about sickle cell disease and the work the Office of Public Health is doing for Louisiana to improve care and help diagnose and treat sickle cell disease in babies as early as possible. There are resources for patients, families, schools and health care providers available.