National Database Would be One-Stop Shop to Advance Knowledge of these Diseases and How to Treat Them
WASHINGTON, D.C. – Today, U.S. Senators Bob Casey (D-PA), Mark Udall (D-CO), Mike Johanns (R-NE), Johnny Isakson (R-GA) and Debbie Stabenow (D-MI) announced they have introduced a bipartisan bill that would establish national registries of neurological diseases such as multiple sclerosis and Parkinson's disease in order to better understand and treat them. The National Neurological Diseases Surveillance System Act’s introduction coincides with the Parkinson’s Action Network (PAN)’s day on Capitol Hill, when advocates will meet with members of Congress and staff about Parkinson’s issues.
Currently, no national system exists for researchers to access accurate data about these neurological diseases, how many people are affected and in what areas of the country, what causes the onset and other information. This lack of fundamental knowledge about these diseases inhibits progress in biomedical research that could help treat and serve those affected by them. This bill would establish a coordinated national database to collect and analyze information on neurological diseases that could then be used to develop research and technological advances, and to create programs and services that help people live independent and productive lives while fighting these diseases.
“As the chair of the Senate Multiple Sclerosis Caucus, it gives me great pleasure to co-sponsor the National Neurological Diseases Surveillance System Act,” said Casey, a longtime supporter of the MS community. “This legislation will improve our understanding of neurological diseases such as multiple sclerosis and Parkinson’s, enabling researchers to work towards new treatments and providing policymakers with more accurate information about the incidence of neurological disease, so that we can craft more effective policies to help individuals suffering from neurological disease and their families.”
“You can’t go up to more than a handful of people on the street before finding someone with a family member or close friend who’s been touched by neurological diseases like Parkinson’s. But experts don’t even have an accurate count of the people affected by these diseases,” said Udall, a co-chair of the Parkinson’s Disease Caucus, whose father, former Congressman Mo Udall, died of Parkinson’s. “Creating a national registry will give the research community a one-stop-shop for data being collected on these and other neurological diseases from around the country. This legislation is just what we need to bridge numbers and science to better treatments, better programs, and perhaps one day, a cure.”
“I am happy to join my colleagues in supporting this legislation that will help the medical community learn more about neurological diseases in order to make progress toward finding cures and improving methods of treatment,” said Isakson. “It is my hope that this effort will result in positive outcomes for the families across the country who are affected by these diseases.”
“Easily accessible and accurate information is critical for experts to help make informed decisions when allocating future biomedical research funding,” said Johanns. “This legislation will help us focus on the most important needs facing researchers and care providers who serve those affected by neurological disease.”
“As a co-chair of the Senate Caucus on Parkinson’s disease, I am fighting every day to find better treatments for this and other devastating neurological diseases. That is why I am proud to be a co-sponsor of the National Neurological Diseases Surveillance System Act,” said Stabenow. “We know so little about neurological diseases such as Parkinson’s and Multiple Sclerosis, but we all know someone who has been impacted by them. This legislation will provide invaluable information to medical researchers that can help them learn what treatments work best, and could hold the key to new breakthrough treatments.”
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