What We Are Trying to Accomplish
Working with our strategic partners within the federal research and health agencies, the Society advocates for government support of accelerating the discovery, development and delivery of novel medical therapies.
Why It’s Important
Biomedical, health and surveillance (data collection) research that monitors trends and compares health outcomes are vital components to people with MS accessing to the best care and the latest science to help them live their best lives.
Agency for Healthcare Research and Quality (AHRQ)
The AHRQ provides evidence for healthcare providers to use to make healthcare safer, higher quality, more accessible, equitable and affordable—ultimately to improve patient outcomes and the health system broadly. In 2015, in order to support providers, AHRQ produced the report, “Decisional Dilemmas in Discontinuing Prolonged Disease-Modifying Treatment for Multiple Sclerosis,” which reflected the influence of patient values and beliefs as well as the preferences of people affected by MS.
Centers for Disease Control and Prevention (CDC)
The CDC is tasked with protecting public health and safety through the control and prevention of disease, injury and disability. The 21st Century Cures Act authorized the creation of a program at CDC to track and collect epidemiological data on neurological diseases. The last national study of incidence and prevalence of MS was conducted in 1975, and no accurate estimates are currently available for MS researchers.
Food and Drug Administration (FDA)
The FDA regulates approximately one-fourth of the American economy, and has a tremendous impact on the development and availability of drugs and devices for people living with MS and other disabilities and chronic conditions. The FDA is charged to advance the public health by helping to speed innovations that make medicines more effective, safe and affordable by providing accurate science-based information needed to safely use medication. Over the past two decades, the FDA has been instrumental in regulating and approving more than a dozen disease-modifying therapies for MS, as well as numerous other medications and interventions for symptom management.
Patient Centered Outcomes Research Institute (PCORI)
The PCORI serves a vital role in ensuring that the public and private healthcare sector industries have valid and trustworthy data on health outcomes, clinical effectiveness, and the appropriateness of different medical treatments. PCORI evaluates existing studies and conducts its own; these comparative effectiveness studies provide important evidence for the best ways to address symptoms like fatigue and the potential to use technology to deliver needed rehabilitation therapies to people in remote areas. In November 2016, PCORI approved an additional $30 million to fund comparative effectiveness clinical trials that will determine the relative effectiveness of different MS treatment protocols.
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