Patrick F. Terry

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[edit] Biography

Patrick Terry’s perspective is forged from personal and family experiences with genetic disease, cancer, and extensive work in the disease advocacy community.

In 1995, Terry’s two children were diagnosed with a rare condition known as pseudoxanthoma elasticum (PXE). In 1996, Terry and his wife, Sharon, founded PXE International, an innovative lay volunteer organization that initiates, coordinates and funds life science research and provides worldwide patient support. PXE International has grown to include an international 22-laboratory research consortium, 52 patient support offices worldwide, a private blood and tissue bank, a registry of thousands of affected individuals and an international molecular epidemiological study. The culmination of this effort toward global coordination of research has led to tremendous scientific advances, multiple gene and technology patents as well as a system for global benefit sharing.

In 2000, these experiences led him to join a group of prominent leaders in the fields of genomics, bioinformatics and biotechnology in co-founding Genomic Health, Inc., a pioneering applied genomics company in California. Terry currently serves as Dir. of Consumer Advocacy and Government Affairs overseeing a wide range of strategic and practical initiatives in their California and Washington, DC locations. Genomic Health has pioneered the use of rational genomic analysis of fixed paraffin-embedded tumor tissues to obtain clinically actionable genomic information in a series of rigorous multi-center cancer clinical trials. Genomic Health is using this extensive clinical experience to develop evidence based clinical genomic services to provide individualized information on the likelihood of recurrence and response to therapy for people living with cancer. In 2006, the Oncotype DX clinical service was incorporated into a Personalized Medicine Trial for Breast Cancer The Trial Assigning IndividuaLized Options for Treatment (Rx), or TAILORx, was launched to assign patients to the most appropriate and effective treatment based on a Recurrence Score. TAILORx is sponsored by the National Cancer Institute (NCI), part of the National Institutes of Health (NIH).

In 2001, he was named President of the International Genetic Alliance, a new alliance of genetic disease patient and parent representatives from around the world, based in The Netherlands. And, in 2003 Terry also co-founded the Genetic Alliance BioBank, which is a private not-for-profit biorepository to enable patient centered research for various diseases. In addition, Terry holds advisory positions in a diversity of biomedical organizations, like the Personalized Medicine Coalition, the PEW Center for Genetics and Public Policy, the American Society of Human Genetics, the Centers for Disease Control and Prevention, the World Health Organization, the National Coalition for Health Professional Education in Genetics, and works directly with numerous patient and consumer groups in the United States and around the world.

[edit] References

Science 27 August 2004: Vol. 305. no. 5688, p. 1226
Learning Genetics. Health Affairs, 22, no. 5 (2003): 166-171
The Advocates. Nature Genetics 38, 391 (2006).
Advocacy groups as research organizations Nature Reviews Genetics 8, 157-164 February 2007