Throughout the year, you've heard the Foundation talk about a new database at the Centers for Disease Control (CDC) to collect vital demographic information on people living with neurological diseases. Earlier this fall, Congress gave the CDC funds to implement this database, called the National Neurological Conditions Surveillance System (NNCSS). The CDC recently announced that Parkinson's is one of two diseases that will be included in the initial rollout of the NNCSS.
While there are rough estimates of the number of people diagnosed with Parkinson's in the United States, we don't have accurate and comprehensive information on how many people are living with the disease, who they are and where they are located. This lack of core knowledge can slow Parkinson's research and therapeutic development. The NNCSS will be a valuable resource for collecting this information. The data could help scientists understand many aspects of the disease, such as clusters of diagnoses in certain geographic regions, differences in the number of men and women diagnosed with Parkinson's, and variability in health care practices among patients.
"Establishing the NNCSS will provide researchers with critical information on the impact of Parkinson's disease in the United States. This database would not have been possible without the efforts of Parkinson's advocates across the country. Our community contacted Congress over 47,000 times this year on this important issue," said Ted Thompson, JD, senior vice president, public policy at The Michael J. Fox Foundation.
In the coming weeks, the Foundation will offer the CDC information on Parkinson's and the role the NNCSS can play in helping to further research. As the CDC releases updates about the database, the latest news will be shared on the Foundation blog.