US Moves Step Closer to National MS, Neurological Disease Registry with Senate Panel Vote

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by Patricia Silva, PhD |

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The U.S. Senate health committee recently passed the “Advancing Research for Neurological Diseases Act of 2015” (S. 849), sponsored by Sens. Johnny Isakson and Chris Murphy, which would create a nationwide system to track the incidence and prevalence of neurological diseases, including multiple sclerosis (MS), and that one day might help lead to a cure.

Committee members approved the bill at first markup in a voice vote called by Sen. Lamar Alexander, TN, Chairman of the Health, Education, Labor & Pensions (HELP) Committee.

The act, which still must be approved by the full Senate, establishes a data collection system — run through the Centers for Disease Control and Prevention — that tracks the incidence and prevalence of neurological diseases such as MS, and incorporates information into a National Neurological Diseases Surveillance System. The information may provide a foundation for evaluating and understanding aspects of these diseases that currently aren’t well understood currently — such as the geography of diagnoses, variances in gender, disease burden, and changes in healthcare practices among patients.

This data registry could help advance research to develop treatments in the U.S. “We can accumulate a body of evidence and clues that can give us the chance to have breakthroughs on any one of those diseases … if not all of them,” Sen. Isakson, a Georgia Republican who announced in 2015 that he was diagnosed with Parkinson’s disease, said in a news release.

Sen. Murphy of Connecticut, said that the data archive provided for within the bill will offer those affected with neurological conditions an opportunity to connect their experiences with national research efforts. “What this bill really is about is creating a doorway that allows for people who are struggling every day with this illness to walk through and greet those who are working on pathways to cures and treatments,” he said.

National Multiple Sclerosis Society representatives acknowledged Sens. Isakson and Murphy for their continuing efforts and for funding the bill. Still, Bari Talente, the MS Society’s vice president of advocacy, said he is concerned about alterations in the committee’s final version.

“We are grateful that Senators Isakson and Murphy have been leaders on this issue and for ushering the Advancing Research for Neurological Diseases Act through the HELP Committee’s mark-up process, despite the language changes that occurred, such as the softening of requiring the Secretary to develop a comprehensive data collection system to instead allowing the Secretary to improve the collection of epidemiological and surveillance data by incorporating the data into a registry. This could hinder the data collection system’s ultimate success. We are happy to be one step closer to establishing a data collection system that will help us track and better understand neurological diseases and we look forward to working with the bill supporters and the committees of jurisdiction as the legislation moves ahead,” Talente said.

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