Data Sources

At a glance

National Neurological Conditions Surveillance System (NNCSS) approaches involve identifying and using the best existing data sources, scanning for new data sources, and preparing to use new data sources.
cross-cut image of brain surrounded by circuitry

How CDC's Data Modernization Informs NNCSS's Data Sources

NNCSS was designed to build on CDC's data modernization.

CDC didn't want NNCSS to be an expensive stand-alone system with data that could become obsolete. Instead, NNCSS is harnessing the power of CDC's connected data ecosystem. This involves

  • Identifying and accessing the best existing data sources to produce surveillance estimates
    • At the national level.
    • For specific populations (e.g., American Indians, rural populations).
    • Related to other factors (e.g., use of health services, having multiple health conditions).
  • Conducting horizon scans to identify emerging and future data sources.
  • Preparing to use emerging data sources.
  • Swapping out or adding data sources to maintain focus on the most important surveillance needs.

These approaches help NNCSS remain state-of-the-art and interoperable with other CDC systems.

Types of Data Sources Evaluated for NNCSS Use

CDC has already evaluated more than 35 data sources. CDC has considered their current and future value for multiple sclerosis (MS), Parkinson's disease (PD), and other neurological conditions. The data sources fall into the following types:

Traditional Data Sources

Administrative data
  • Claims (Medicare, Medicaid, commercial)
  • Hospital discharge
Survey data
  • National Center for Health Statistics (NCHS)
  • Other
Vital records
  • Deaths
  • Live births

Newer Data Sources and Methods

Widely available
  • Electronic health (medical) records
Exploratory
  • Linking electronic health records and claims
  • Machine learning
  • Collaborations with clinical networks and registries
  • Electronic case reporting

NNCSS and Registry Data

There are many benefits of registries.

  • Registries collect data on individuals with a condition of interest.
  • Data typically include name, contact information, demographics, and health information.
  • Registries may also collect biological specimens.
  • Patient data and specimens make registries valuable for research.
  • Registries can help researchers locate patients for research studies and follow patients over time.


There can be challenges with registries when building a national surveillance system.

  • Collecting and maintaining all the information in a registry is expensive and labor-intensive.
  • The expense would be especially high for NNCSS, which is mandated to track numerous neurological conditions.
  • Most registries are voluntary. Patients must consent to have their information and specimens included.
  • Voluntary registries may be missing significant numbers or types of patients.
  • Missing data could affect the accuracy of national surveillance estimates.


For these reasons, CDC is

  • Currently using other data sources that are more accurate for national surveillance of PD and MS.
  • Using horizon scanning to identify opportunities to collaborate with registries to answer specific questions.
  • Exploring possible future use of registry data from states where PD is a reportable condition.
  • Encouraging states where PD is reportable to collect data via electronic case reporting.
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Content Source:
Office of Public Health Data, Surveillance, and Technology (OPHDST)