Research progress depends on data patients share, but what else should we know? What makes data useful and valuable to researchers? How do we collect data that is high quality? What are CDISC standards and why are they important? What are the real-life examples of successful use of natural history studies and how have they helped patients? What are the challenges in data collection and what can we do to overcome them? What should patients, researchers, or industry representatives know? Please join our webinar to hear perspectives on these questions from our speakers from various backgrounds, from patient advocacy to industry, and everything in between. You will be able to ask your questions and share your comments. This is a FREE collaborative event for the entire community.
  • Welcome
  • Panel Speakers
  • Q&A (if time allows!)
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    Savvy Coop
    Savvy Cooperative is the first and only patient-owned public benefit co-op. Savvy empowers patients to co-create new solutions, by giving them a sense of purpose, and helping them earn money. In healthcare, this is done by giving patients direct ways to share their experiences with health innovators, and advocating that they be fairly compensated for their contributions.
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    Rhonda Facile
    Vice President, Partnerships and Development
    With over 25 years of experience in global clinical and standards development, I work with global stakeholders, including regulatory authorities, pharma, vendors, academics and SDOs in collaborative initiatives that extend and connect the CDISC standards with the goal of turning data into knowledge and getting treatments to patients that need them.
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    Sophia Zilber
    Cure SURF1, Board Member
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    Jason Colquitt
    Jason lives outside Atlanta, Georgia with his wife and four children. He has been blessed to meet and work with many amazing people and organizations during his 20+ years in the healthcare technology field. His work has caused positive disruption within the healthcare industry as he has partnered with many organizations ranging from small start-ups to some of the world's largest health companies including Greenway Health, Walgreens/Boots Alliance, Quintiles, IQVIA, Cystic Fibrosus Foundation, Muscular Dystrophy Association, the American College of Surgeons, and many more.

    Today, Jason is CEO of Across Healthcare, which he founded in 2012 to envision, design, and deliver innovative technology solutions to organizations across the healthcare continuum. This includes supporting patient, provider, payor, and life sciences organizations. In January of 2019 while attending the JP Morgan Healthcare Conference, Jason received a clear vision to use his experiences and technical background to help the rare disease community. Thus, Matrix was born. It is Jason’s and Across Healthcare’s hope and desire to use the Matrix platform to help care for and cure rare diseases.
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    Kasey Woleben
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    Suyash Prasad, MBBS, M.Sc., MRCP, MRCPCH, FFPM
    Chief Medical Officer and Head of Research and Development, Taysha Gene Therapies
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    Molly Schreiber
    Community Manager at Savvy Cooperative
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    Vanessa Vogel-Farley
    Research and Data Governance Platform Lead for RARE-X
    Vanessa serves the rare disease community as the Research and Data Governance Lead For RARE-X ( and also as Executive Directory of the Dup15q Alliance. Previously, she was at the University of Minnesota, Center for Neurobehavioral Development. She has also served as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. She possesses 15 years of experience in data collection methods as well as expertise in non-profit and research operations, patient advocacy, and support, non-profit management, and broad knowledge of child development neuroscience/psychology research and administration.