Sickle Cell Data Collection (SCDC) Program
The Sickle Cell Data Collection (SCDC) program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD.
Early screening, diagnosis, and treatment have allowed people with SCD to live much longer, making now a more important time than ever to study SCD health across the life course.
How can the SCDC program improve the lives of people with SCD?
The SCDC program strives to improve health outcomes for people with SCD. By documenting health information of patients with SCD in the United States over time, the program can identify critical gaps in diagnosis, treatment, and healthcare access for people with SCD. For example, while early screening, diagnosis, and treatment have increased the lifespan for people with SCD, there are fewer than five hematologists seeing adult patients with SCD in California, limiting access to proper care and treatment for many adults. The SCDC program will use this type of key information to educate stakeholders about the gaps in care for people with SCD.
Backed by accurate, scientific information, the SCDC program can inform stakeholders about how these gaps can be filled through policy changes, improved healthcare practices, and new medications. Stakeholders include healthcare providers, advocacy groups, policy makers, researchers, drug developers, and federal agencies.
What will the SCDC program help us better understand?
Where people with SCD live
Developing maps that show where patients are geographically located can help us answer questions, including
- Can we help patients receive care that is closer to where they live?
- How does availability of public transportation influence access to care?
Transition from pediatric to adult care
A better understanding of the challenges faced by patients moving from a pediatric care setting to an adult care setting will help us address questions, like
- Why do transitioning patients with SCD have the most severe symptoms and higher use of healthcare services?
- Do additional conditions during childhood, like asthma and stroke, lead to poor health as a young adult?
Studies estimate that about 10% of patients with SCD in the United States are Hispanic. By collecting data about this group, the SCDC program can help us understand
- What are the challenges of diagnosing patients born outside of the United States or before newborn screening began in the United States?
- What are the differences in complications and death rates among people of different races/ethnicities?
People with SCD are living longer, so we have the opportunity to study them as they become older adults. The SCDC program will take advantage of this opportunity to help figure out
- What are common complications for patients as they age?
- Are physicians screening for common diseases like cancers and heart disease among older patients with SCD?
Use of healthcare services
The information collected by the SCDC program is uniquely able to identify patterns in how often patients with SCD use healthcare services, which can give us insight into
- What preventable complications lead to frequent use of healthcare services and how can we reduce these complications?
- Which treatments and healthcare practices help to reduce how often patients require healthcare services?
How does the SCDC program collect data?
The SCDC program will collect information from various sources, including
- Newborn screening records,
- Administrative datasets (for example, hospital discharge, emergency department, and state Medicaid data),
- Death records, and
- Medical charts.
Which states are involved in the SCDC program?
The program began in California in 2015, when we started gathering health information for the approximately 7,000 state residents living with SCD. As more resources become available, we plan to expand the program to include additional states, building the framework for the first national SCD registry with the potential to collect health status, treatment, and healthcare utilization information on every person diagnosed with SCD in the United States.
How is the SCDC program different from previous data collection efforts?
CDC previously developed the Registry and Surveillance System for Hemoglobinopathies (RuSH) and Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), which linked data from multiple sources to identify and to gather health status, treatment, and healthcare utilization information about everyone living with SCD in participating states during 2004-2008.
The SCDC program will “carry the baton” from RuSH and PHRESH by gathering and analyzing data from 2004 through 2014, and continually collecting subsequent years of data as they become available. The program will expand upon previous efforts by documenting aspects of health throughout the entire life course of patients with SCD to answer additional questions. Learning from RuSH and PHRESH, the program will also contribute new areas of expertise in linking data, geographic mapping, data analysis, outreach, and information sharing.
Which organizations are involved in developing the SCDC program?
The CDC Foundation is partnering with CDC’s Division of Blood Disorders, the California Rare Disease Surveillance Program, Pfizer Inc. andBiogen to support the initial development and implementation of the SCDC program. Pfizer and Biogen provide funding support, and the CDC Foundation administers the grants. The SCDC program also includes input from a wide range of partners about the most important questions that can be answered with the data being collected and the key areas of concern for people with SCD and the healthcare professionals who treat them. These partners includeCDC|SCDC Program|Hemoglobinopathies Monitoring|NCBDDD