Patrick F. Terry
Patrick F. Terry is a USA enterpreneur and disease advocacy leader. Amongst his achievements are co-discovery of the genetic basis of pseudoxanthoma elasticum.
In 1995, Terry's two children were diagnosed with the rare condition pseudoxanthoma elasticum (PXE). Together with his wife Sharon he founded PXE International in 1996. This is a lay volunteer organization that initiates, coordinates and funds life science research and provides worldwide patient support for pseudoxanthoma elasticum patients. Over the years, 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 significant 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 Directory 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 (Nasdaq: GHDX) product Oncotype DXTM is in clinical use today in breast cancer is a theranostic test that enables the practice of personalized medicine and the conduct of modern individualized medicine trials.
Patrick’s public policy activities are focused on the regulatory and business practices impacting genomic-based healthcare.
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 Charitable Trusts funded for Genetics and Public Policy Center, 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.
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