Published April 5, 2013
State Sen. Mark Grisanti, along with multiple sclerosis patients and UB researchers, advocated last week for funding from New York State to maintain and expand the New York State MS Registry and Consortium.
The consortium and registry are led by Bianca Weinstock-Guttman, professor in the Department of Neurology, UB School of Medicine and Biomedical Sciences. MS specialists from around the state are members of this consortium of MS Centers and enroll patients in the registry. In exchange, they may use the registry data for their research.
“This is very personal to me; my brother, Richard, has MS and I know firsthand the struggles that MS patients go through,” Grisanti said in a statement. “We must be able to detect the causes of MS at the earliest stage. In Western New York, we have one of the highest populations of people who suffer from MS in the nation. That is a cause for immediate action and continuing to support and fund the New York State Multiple Sclerosis Registry.”
Grisanti is a member of the New York State Multiple Sclerosis Legislative Alliance.
Fifty supporters of the statewide MS Registry gathered to advocate for state funding at a press conference on March 15 in UB’s Clinical and Translational Research Center on the Buffalo Niagara Medical Campus.
Founded in 1994, the New York State Multiple Sclerosis Consortium is a group of 15 MS centers across the state organized to assess the demographic and clinical characteristics of MS patients seen in their centers. This MS registry is one of the largest MS databases in the world; it is unique in that it includes information gathered from both the clinician and the patient, which makes it valuable to researchers. The registry includes the records of nearly 10,000 MS patients, representing approximately one-third of the 30,000 New Yorkers who have this progressive disease for which there is no known cause or cure.
“MS costs New York State up to $2.5 billion a year in health care costs, lost wages and tax revenue,” said Weinstock-Guttman. “And all that is being asked for is $1 million to continue the registry. The registry provides researchers like me and my colleagues at UB and across the state with an invaluable tool to learn who will best benefit from certain drugs and treatments, what is causing MS and, someday, how to prevent it.”
UB researchers have been working for years to get a better understanding of MS in order to develop better ways to diagnose and treat it. They say the registry provides a critical, real-world view of the disease and insight into how patients deal with the symptoms of the disease on a daily basis.
Among the issues researchers wish to examine is whether the high rates of MS in New York State are due to environmental causes. “The data supplied by the registry will allow us to study patterns and variations caused by exposure to air, water nd other environmental factors throughout the state to see how those factors may affect the risk of developing MS and how patients experience it,” said MS researcher Murali Ramanathan, professor of pharmaceutical sciences, UB School of Pharmacy and Pharmaceutical Sciences.