The Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting on November 17-19, 2016 is approaching quickly, and two of its scheduled speakers are building momentum for the event with the publication of guest blogs detailing their clinical research experience. Although both blogs offer a unique perspective, both describe their authors’ personal passion to further PCORI’s mission to build and enhance patient-centered research.
The first blog is authored by Megan O’Boyle, whose 16-year-old daughter suffers from rare disease called Phelan-McDermid Syndrome (PMS). An active member of PCORnet’s Phelan-McDermid Syndrome Data PPRN, Megan knows all too well how lack of real-world data access can stall progress toward rare disease therapies – and how PCORnet is positioned to reverse this trend. Read her recent blog in anticipation of the event here.
The second blog was written by Stephanie Buxhoeveden, a Multiple Sclerosis (MS) patient and a neurology nurse practitioner specializing in MS. Stephanie will be speaking at the PCORI Annual Meeting about her experience furthering patient-centered research alongside PCORnet’s MS PPRN, iConquerMS. Click here to read her PCORI Annual Meeting pre-event blog in full.
Click here to see the PCORI Annual Meeting’s agenda in full. Can’t make the event in person? Follow us on Twitter for live tweets during the meeting that will keep you up-to-date on highlights and available webcasts.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.