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 ÐÇ¿ÕÓéÀÖ¹ÙÍø's Data Modernization Informs NNCSS's Data Sources

NNCSS was designed to build on ÐÇ¿ÕÓéÀÖ¹ÙÍø's data modernization.

ÐÇ¿ÕÓéÀÖ¹ÙÍø didn't want NNCSS to be an expensive stand-alone system with data that could become obsolete. Instead, NNCSS is harnessing the power of ÐÇ¿ÕÓéÀÖ¹ÙÍø'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 ÐÇ¿ÕÓéÀÖ¹ÙÍø systems.

Types of Data Sources Evaluated for NNCSS Use

ÐÇ¿ÕÓéÀÖ¹ÙÍø has already evaluated more than 35 data sources. ÐÇ¿ÕÓéÀÖ¹ÙÍø 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, ÐÇ¿ÕÓéÀÖ¹ÙÍø 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)