Progress to Date
Established and Strengthened Partnerships
- Engaged on an ongoing basis with professional and non-profit organizations for PD, MS, and neurology to ensure representation of the needs and perspectives of PD and MS patients and caregivers.
- Collaborated with the Association of State and Territorial Health Officials to hold a one-day meeting with patient advocacy and other non-governmental organizations representing a range of neurological conditions.
- Developed working relationships with health department staff and their partners in states who are developing state PD registries (California, Nebraska, and Utah) and provided consultation around electronic case reporting.
- Collaborated with the Council of State and Territorial Epidemiologists (CSTE) to catalogue existing registries and other data collection efforts that could be involved in research and improving prevention and patient care based on NNCSS findings.
Expanded Scientific Expertise
- Solicited input from national PD and MS experts on priority information needs for NNCSS to fill and NNCSS methods and findings.
- Engaged experts from the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NINDS) as members of a CDC working group on NNCSS methods and as participants in a pilot study evaluating the usefulness of machine learning for predicting and diagnosing Parkinson’s disease
- Established fellowship mechanisms with Emory University and the Atlanta Veterans Affairs Medical Center to secure the expertise of clinical neurologist scientists specializing in PD and MS. Also consulted with Emory, Morehouse University, NINDS, and others about extending such fellowships in future years to secure specialist expertise for other neurological conditions.
Produced Surveillance Estimates for MS and PD
- Assessed the state of the science used to estimate PD and MS prevalence, incidence, and mortality to select the most useful and accurate definitions (i.e., criteria or algorithms) for identifying cases of PD and MS in the data sources available to the NNCSS now and in the foreseeable future.
- Conducted multiple environmental scans to identify existing and emerging data sources that could provide access to different types of information (e.g., diagnostic codes, prescription drug use, race/ethnicity, long-term care, etc.). Assessed each data source to determine its current and future value for surveillance of PD, MS, and other neurological conditions. These data modernization approaches of regularly searching for and securing the best available data at a given time will help NNCSS remain state-of-the-art and interoperable with other surveillance systems rather than becoming a stand-alone system with limited data that could become obsolete.
- Applied the selected PD and MS surveillance case definitions in the selected data sources to produce national estimates of MS and PD prevalence for 2019. This included overall prevalence as well as differences by age, sex, race/ethnicity, and geographic region.
- Produced two technical reports —one each for MS and PD— describing the methods used to identify cases (i.e., people with the disease) within data sources available to CDC for national surveillance, and that present national prevalence estimates for 2019 by select demographic and geographic characteristics. These reports have been identified as Influential Scientific Information and are undergoing independent peer review.
- Documented research needs and other important gaps in the evidence.
Proposed Approaches for Maintaining and Extending NNCSS
- Combined lessons learned with scientific findings to produce a set of robust, replicable, and sustainable approaches—inclusive of methods, data sources, staffing, and costs—that can be scaled up and rolled out to maintain ongoing surveillance of PD and MS, and to add surveillance for other neurological conditions.