Q. How has CDC been collaborating with stakeholders to develop and implement NNCSS?
A. CDC has proactively engaged principal stakeholders and has been actively collaborating with patient advocacy organizations such as the National Multiple Sclerosis Society and the Michael J. Fox Foundation for Parkinson’s Research who represent those impacted by devastating neurological diseases and conditions. CDC is also collaborating with other federal colleagues at the National Institutes of Health’s National Institute of Neurological Disorders and Stroke as well as the U.S. Department of Veteran’s Affairs.
In March 2019, CDC coordinated an initial stakeholder meeting in Washington, DC. During this event, CDC and primary stakeholders representing MS and PD and federal colleagues discussed the project and covered topics related to science, policy, and communication. Participants exchanged information and learned more about CDC’s approach to standing up surveillance. Attendees also had an opportunity to review and provide feedback on the logic model pdf icon[PDF – 57 KB] for fiscal year 2019.
On November 5, CDC collaborated with the Association of State and Territorial Health Officials to bring together 34 patient advocates representing a broad range of neurological conditions to discuss public health surveillance needs and provide updates on the progress. Major themes emerging from the roundtable discussion at the meeting included: data, analytics, and the analysis needs; stakeholder engagement requests; patient mental health and wellbeing concerns; criteria for choosing the next neurological condition for surveillance; financial and cost considerations; and policy and communication needs.
Q. How much would it cost to add another condition (e.g., condition X)?
A. One of the main purposes of the stage one demonstration projects, using MS and PD, is to determine how to undertake surveillance in a way that maximizes quality, timeliness, and efficiency. It is important for CDC to complete stage one work, and establish meaningful cost estimates for initiating surveillance for a new condition, prior to adding additional conditions.
The intent for stage two (depending on resources) is to build out NNCSS to collect surveillance data on an ongoing basis for MS and PD, using successful approaches from stage one, and assessing costs and staffing needs for ongoing surveillance. CDC can most effectively extend the NNCSS to additional neurological diseases and conditions during stage three (pending resources) by incorporating lessons learned in the first two stages.
Q. Are stages 2 and 3 of the NNCSS plan dependent on funding?
A. Yes, CDC will be able to proceed to stages two and three only if additional funding is appropriated. Stable funding would allow ongoing efforts for PD and MS, without disrupting work or losing the benefit of efficient allocation of resources, such as people and funds.
Q. What is the relationship between NNCSS and registries? How are they different and what role does each play in getting the information needed to further research?
A. Public health surveillance efforts, such as the NNCSS, gather data on the prevalence of diseases and conditions. Prevalence is the presence of a disease or condition in the population (i.e., how many people in the population have the disease or condition). Surveillance data, such as prevalence, can be gathered from a variety of sources including administrative data (e.g., Medicare, Medicaid), mandated reports (e.g., data on reportable conditions), surveys, and registries.
Registries systematically collect data on specific individuals—sometimes a lot of data—and they also may collect biological specimens. There are many benefits to registries. The detailed patient information and biological specimens make registries extremely valuable for research, as well as for informing clinical care. Registries can also help researchers locate potential patients for research studies because registries include personally identifiable information.
As valuable as registries are, they also have their challenges if trying to build a surveillance system at the national level. Collecting and maintaining all of the information in a registry is very expensive and labor-intensive. The expense will be even greater for a system expected to undertake surveillance of numerous conditions. Also, most registries are voluntary, and patients must consent to have their information and biological specimens included. As a result, the registries may be missing significant numbers or types of patients, which could affect the accuracy of national prevalence estimates.