Progress

Completed NNCSS Stage 1 Deliverables

1. Produced Initial Set of Surveillance Estimates for MS and PD

NNCSS's Initial Surveillance Findings Finalized

CDC assessed all relevant evidence to select the best definitions for identifying people with MS and PD in existing data sources. CDC then used these definitions in the best existing data sources to produce prevalence estimates for MS and PD.

In 2023, CDC completed all quality control and finalized NNCSS's first set of national MS and PD prevalence estimates. The estimates are for 2019, the most recent year for which complete data were available. The estimates include:

• Overall national prevalence of MS and PD.
• Prevalence of MS and PD by
  • Age.
  • Sex.
  • State.
  • Region of the country.
  • Race/ethnicity (where data were available).

This is the first of the two major deliverables for NNCSS's Stage 1.

External Peer Review Required Before Release of NNCSS's Initial Surveillance Findings

NNCSS's initial methods and findings were classified as Influential Scientific Information that could impact public policy or the private sector. Therefore, as part of CDC's Peer Review Agenda, CDC

• Produced two 100-page draft technical reports describing methods and findings—one for MS and one for PD.
• Arranged for independent peer review of these reports in 2024 by external subject matter experts.
• Posted the draft reports on the NNCSS website during the six weeks they underwent peer review.
• Received feedback on the reports from partner advocacy and research organizations.
• Posted CDC’s response to peer reviewers for the PD Report in August 2024.
• Anticipates posting CDC’s response to peer reviewers for the MS Report by early 2025.

The draft report titles and information about the peer review appear below.

Parkinson's Disease

Prevalence of Parkinson's Disease: Methods and Prevalence Estimates by Age, Sex, and other Demographic and Geographic Characteristics among Adults Aged 35 and Older, United States, 2019.

• Peer Review Plan [464 KB, 22 Pages]
  Includes the Summarized Peer Reviewer Commentary and Responses to Commentary.

Multiple Sclerosis

Prevalence of Multiple Sclerosis: Methods and Prevalence Estimates by Age, Sex, and other Demographic and Geographic Characteristics among Adults Aged 18 and Older, United States, 2019

• Peer Review Plan [285 KB, 3 Pages]
  Summarized Peer Reviewer Commentary and Responses to Commentary will be included after the peer review and commentary development process are completed.

Public Release of NNCSS's Initial Surveillance Findings

In 2025 and 2026, CDC anticipates

• Publication of a series of journal articles presenting NNCSS's initial methods and findings.
• Data visualization products to increase awareness, understanding, and use of the findings.

2. Proposed Approaches to Maintain NNCSS and Add Conditions

CDC combined lessons learned with methods and findings to produce a set of approaches that can be

• Rolled out to maintain (i.e., prevalence) and expand (e.g., add mortality) surveillance of PD and MS.
• Scaled up to add surveillance for other neurological conditions.

These approaches include methods, data sources, staffing, other resources, overall costs, and costs per neurological condition.

This is the second of two major deliverables for NNCSS's Stage 1 demonstration projects.

Established and Strengthened Partner Engagement

CDC has engaged federal agencies and professional and patient advocacy organizations as partners throughout NNCSS development.

National Institute for Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH)

• Provided early input into NNCSS methods.
• Shared how NNCSS data would be useful to them.
• Served as ad-hoc members of a CDC working group on NNCSS methods during initial methods development.
• Participated in a pilot study evaluating usefulness of machine learning for predicting and diagnosing PD.
• Continues to provide feedback at important milestones for NNCSS methods and findings.

Department of Veterans Affairs

• Provides feedback at important milestones for NNCSS methods and findings.

Professional and patient advocacy organizations

• For MS and PD (e.g., National Multiple Sclerosis Society, Michael J. Fox Foundation for Parkinson’s Research)
  • Provided input on priority information needs NNCSS could fill.
  • Provided early input into NNCSS methods.
  • Invited to provide feedback at important milestones for NNCSS methods and findings.
  • Asked to recommend trusted subject matter experts to provide feedback on NNCSS work.
  • Continue to share needs of patients, caregivers, neurologists, and researchers during regular meetings.

Public health agencies and organizations

• Engaged with health department staff and their partners in states where PD is a reportable condition. Provided consultation around identifying PD cases and using electronic case reporting.
• Collaborated with the Council of State and Territorial Epidemiologists (CSTE) to begin cataloguing existing MS and PD registries. Explored how the registries can assist with research and practice based on NNCSS findings.

Expanded Scientific Expertise

CDC regularly requests input and feedback from NINDS, VA, partner organizations, and other national PD and MS experts. CDC has also established fellowship mechanisms to ensure ongoing access to specialized expertise in clinical neurology.

• Fellowships with Emory University and the Atlanta Veterans Affairs Medical Center provide clinical neurologist scientists specializing in MS or PD.
• CDC has consulted with Emory, Morehouse University, NINDS, and others about extending to other institutions for future needs.

Produced 2020 Interim Report to Congress

This report provides an overview of CDC’s progress as of 2020 in developing surveillance for neurological conditions. The report was prepared in response to a requirement in NNCSS’s authorizing legislation pursuant to Section 2061. The legislation requires an interim report regarding "aggregate information collected . . . and epidemiological analysis, as appropriate."