14 March, 2017
1:00 PM EST
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Join us for an interactive Webinar!

Real World Data Research Readiness: Engaging the Prader-Willi Syndrome Community.

Tuesday, March 14
1:00 PM EST

FPWR is thrilled to announce an interactive webinar opportunity for community members to learn and provide input about “Real World Data” and ways it can be used to better understand PWS. Real World Data (RWD) refers to mobile technology (apps), wearable devices (eg., ‘fit bit’), electronic health records, registries, and other electronic databases. RWD technologies provide new opportunities for transforming biomedical research. University scientists, NIH scientists, pharmaceutical companies, and the FDA are all developing projects that incorporate RWD. The goal of the webinar is to explore how RWD can be used to better understand PWS, to improve the health of those with PWS, and how it can be incorporated into clinical trials to measure outcomes that are important to individuals with PWS and their families.  In order for RWD to reach its full potential to help those with PWS, it’s critical to have the patient perspective represented.

Webinar attendees will be introduced to concepts and application of real world data, and have an opportunity to ask questions and contribute feedback. Therefore although a recording will be made available, we would encourage attending the live webinar if possible. This webinar is Part II of an award FPWR received from PCORI titled: “Real World Data Research Readiness: Engaging the Prader-Willi Syndrome Community.” This web-based presentation is designed to reach a wider audience of those people that were not able to attend the in person workshop held in conjunction with the FPWR annual conference last fall. More details on the award can be found here.


Chris Jones, PhD
Co-Founder of iTakeControl, and Principal of CJ Jones Strategy & Communications, Inc

Brent Clough
CEO, Trio Health, Inc

Theresa Strong, PhD
Director of Research Programs, Foundation for Prader-Willi Research

Jessica Bohonowych, PhD
Associate Director of Research Programs, Foundation for Prader-Willi Research

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This webinar will last approximately 60 minutes.

This Workshop is partially funded through a PatientCentered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award EAIN-4003. 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.