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Matthew Smith

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Matthew Smith
Matthew Smith
Project Manager, CENA

Matt manages Genetic Alliance's Community Engaged Network for All (CENA), a Patient-Powered Research Network (PPRN) working to engage communities and building participant-centric research cohorts using web-based tools. Genetic Alliance leads CENA as a collaborative of 11 disease advocacy organizations (DAOs) representing more than 30 common and rare conditions, the University of California San Francisco, the University of California Davis, and Private Access. DAOs are comprised of patient and caregivers who are driving comparative effectiveness research, with the goal of accelerating treatments.

CENA offers a registry to individuals with any condition, as well as healthy individuals (PEER), and an online collaborative forum where participants, patients, clinicians, researchers, and other stakeholders come together to design, implement, and disseminate research studies (MOSAIC). CENA envisions a world where ordinary people are full participants in the research enterprise, prioritizing research questions, enabling multi-stakeholder engagement in research, driving research, and alleviating suffering in their communities. By supporting a broadly accessible online environment where communities and researchers have equal voice in the development of research hypotheses, CENA is piloting new methods of facilitating collaboration among researchers and participants.

Matt also serves in leadership with the Joubert Syndrome Foundation (JSRDF), one of the 11 CENA-member DAOs. He has an eight-year-old niece, Haley, who has Joubert syndrome (JS). The JSRDF provides support for families, influences (and now conducts, through CENA) research, and expands education on JS. He serves on the Growth & Development, Conference and Scientific Committees of the JSRDF, and is Principal Investigator of Genetic Alliance’s PEER registry for JS called the Joubert Syndrome Link to Information and Family Exchange (JS-LIFE). He oversees the JS-LIFE registry and research studies utilizing its data, ultimately disseminating outcomes to patients and their families, healthcare providers, and other researchers. His passion for this work also arises from the desire to advance support and research for all individuals with rare conditions worldwide.

By trade, Matt is a research specialist and laboratory manager at the University of North Carolina. He studies the genetic and biochemical underpinnings of various forms of cancer, cancer metabolism, and epigenetics, and he has co-authored 15 peer-reviewed articles. Matt also has extensive involvement with other DAOs on shared aspects of their challenges and journeys, is a Patient Representative for CENA, and has been consultant to various genetic education initiatives in the United States.

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