About
We started this blog to fill a void in data about sickle cell disease. These gaps in data exist for several reasons:
The US health system is fragmented and most data collection happens on state, local, or health care facility level (if at all.)
SCD is a rare disease, which means it is more difficult to collect data and make reliable inferences about a population in absence of a centralized system.
The CDC has a Sickle Cell Disease Data Collection program, but it relies on voluntary participation. As a result, 16 states currently participate, which represents about 36% of all people with SCD in the US. While progress is being made, many states, including some with significant SCD populations such as New York, are not participating.
There is no centralized patient registry - a gold standard for rare diseases (for example, see here for cystic fibrosis.) Existing registries, such as Globin Regional Data and Discovery (GRNDaD) registry - represent a significant step forward, though they may still capture a small proportion of health care sites and patients.
Constraints like a small sample size can make working with available data more challenging. However, there are various statistical methods to address this issue. Although these methods may require additional analytical capacity, this challenge is not unique to medicine or public health.
Structural, institutional, and interpersonal racism that impacts everything from health care experiences to funding for disease research.
A National Academies report on sickle cell disease concluded that there are gaps in information for SCD that do not exist for similar diseases. The report made several recommendations to address these gaps:
The Centers for Disease Control and Prevention should work with all states to develop state public health surveillance systems to support a national longitudinal registry of all persons with sickle cell disease.
The Health Resources and Services Administration, the National Institutes of Health, and the Agency for Healthcare Research and Quality should develop a clinical data registry for sickle cell disease. The registry would allow for identifying best practices for care delivery and outcomes.
The Office of the Assistant Secretary for Health should establish a working group to identify existing and disparate sources of data that can be immediately linked and mined. These data can be used to provide needed information on sickle cell disease health care services usage and costs in the short term.
(emphasis added)
In a way, this blog is an attempt to contribute to recommendation #3. Among the things we’re doing:
Use publicly available data to inform about SCD
Compile existing information and highlight issues
Promote transparency about data analyses and their limitations. We hope this may also encourage others to explore data and make contributions of their own.
Have questions or feedback? Notice any errors? Please let us know!
