Progress to Date
Collaborations with Interested Parties
- Collaborated with Parkinson’s disease (PD) and multiple sclerosis (MS) patient advocacy organizations on an ongoing basis 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.
Producing Surveillance Estimates for MS and PD
- Assessed the state of the science used to estimate PD and MS prevalence, incidence, and mortality to determine the most useful and accurate algorithms (i.e., criteria) 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.). Evaluated each data source to determine its value for surveillance of PD, MS, and other neurological conditions. Consistent with data modernization, these processes for securing the best available data will help NNCSS remain state-of-the-art and interoperable with other surveillance systems, rather than a stand-alone system with limited data that could become obsolete.
- Applied the selected PD and MS case algorithms in the chosen data sources, made refinements where necessary, and piloted approaches for estimating prevalence and mortality, as well as differences by demographic characteristics (age, sex, race/ethnicity, geographic region, urban/rural) and health status (e.g., medication use).
- Documented research needs and other important gaps in the evidence at all stages of NNCSS work.
Expanding Scientific Expertise
- Engaged national experts on PD and MS in identifying priority information needs for NNCSS to fill and determining the most robust algorithms for identifying PD and MS cases and deaths.
- Engaged experts from the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NINDS) as members of the CDC working group providing feedback on NNCSS methods, and as participants in a pilot study evaluating the usefulness of machine learning for predicting and diagnosing Parkinson’s disease.
- 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.
- Established fellowship mechanisms with Emory University and the Atlanta Veterans Affairs Medical Center to secure the expertise of clinical neurologists specializing in PD and MS, and consulted with Emory, Morehouse University, NINDS, and others about extending such fellowships in future years to secure specialist expertise for other neurological conditions.
- Initiated a collaborative effort with the Council of State and Territorial Epidemiologists (CSTE) to catalogue existing registries and other data collection efforts that could be involved in PD and MS research and improvements in prevention and patient care based on NNCSS findings.
Proposing Approaches for Maintaining and Extending NNCSS
- Combined lessons learned with scientific findings to produce draft proposals of robust, efficient, replicable, and sustainable approaches that can be scaled up and rolled out to build out NNCSS to maintain ongoing surveillance of PD and MS, and to extend NNCSS to add surveillance for other neurological conditions.
- Used lessons learned from approaches to estimate costs and resources needed to maintain surveillance and add surveillance for additional neurological conditions.