The new law calling for the federal government to collect data on U.S. residents with neurological conditions such as Parkinson’s will help refine disease research and make care more accessible, the Michael J. Fox Foundation (MJFF) for Parkinson’s Research said.
President Donal Trump recently signed into law the Labor, Health and Human Services, Education (LHHS) and Defense spending bill, which provides $5 million in funding to the Centers for Disease Control (CDC) for the National Neurological Conditions Surveillance System authorized in 2016 by the 21st Century Cures Act.
“We’ll finally get a more accurate number in terms of how many people live with Parkinson’s disease. But the real meat of what this system will do is provide scientists with much more comprehensive data which they can use to target research more,” Ted Thompson, MJFF senior vice president, public policy, told Parkinson’s News Today.
“We’re thrilled that this got funded.”
The signing was a major development for patient groups such as MJFF and the National Multiple Sclerosis Society (NMSS), which have fought for system authorization and funding since 2006.
Within the past year alone, system advocates sent 46,000 emails to lawmakers, and held hundreds of meetings. “It’s been a multi-pronged effort,” Thompson said.
Most details concerning implementation, such as how information will be collected, and for how long, is up to the CDC, which at press time had not responded to an information request for those details. However, Thompson said he “would hope” the process is underway within a year.
“I can envision a situation where they start to collect for a certain baseline to get certain data, then expanding it,” he said.
The NMSS has said that Shawna Mercer of the CDC will lead data collection. She’s chief of the Centers’ Community Guide Branch, and director of the guide to Community Preventive Services. The CDC website touts the guide as a pre-imminent source of recommendations regarding public health programs, services and policies. Mercer, who has a PhD in epidemiology from the University of Toronto, has worked in Canada and the United States as a researcher, evaluator and practitioner.
The MJFF had a preliminary meeting with the CDC in August 2017. Now that funding’s in place, Thompson expects another one soon. The meeting last year sent the message that the system will not be one-size-fits-all, he said, adding that nearly 90 percent of Parkinson’s patients are on Medicare, whereas most multiple sclerosis patients are not.
“The CDC is very open to getting it right, and we’re happy to have a good working relationship,” he said, “There are more than 400 neurological diseases.”
The NMSS also has said that those living with neurological disease won’t have to take any action regarding collection, and that information possibly will be culled from medical records and insurance claims.
As details emerge, the MJFF will apprise Parkinson’s patients initially via its blog and newletter, Thompson said.
The system is expected to significantly advance research by providing analysis of genetic and environmental neurological disease factors. In addition, it will give insight into the geography and demographics of diagnoses, variances in gender, the percentage of U.S. residents who have neurological diseases, and healthcare practices and utilization.
“It will give us a national picture and highlight whether there are disease clusters in urban or rural areas, which can lead to further discoveries regarding environment aspects,” Thompson said.
There are now estimated to be at least one million U.S. residents living with Parkinson’s, markedly more than previous approximations, which Thompson said were extrapolated from a 1970s study of a single county in Mississippi.
Many individuals don’t get diagnosed because there are no disorder specialists nearby. “So, this survey could help provide better access to high-quality care,” Thompson said.
The MJFF’s mission is to find a cure for Parkinson’s by funding research and ensuring the development of improved therapies for those living with the disease.