talks + publications

 “US Health Care Reform and the Future of Stratified Medicine,” University of Utah, UT.
“Adapting Genomic Diagnostics to Accountable Care Organizations,” Philips, PA.
“The Business Model for Companion Diagnostics,” CDx Summit, MA.
“Mergers and Acquisitions: The Future Personalized Medicine,” Diagnostics Summit, CA.
“The State of Personalized Medicine Industry,” G2 Diagnostics Summit, MA.
“Business-to-Business Future for Personalized Medicine,” Technology Museum, CA.
“Personalized Medicine – Healthcare Reform, Politics and Health Economics,” CA.
“Business and Science of Personalized Medicine,” Venture Capital Symposium, CA.
“Industrialization of Personalized Medicine,” U.S. Dept of Commerce/NIST, DC.
“Genomics in Routine Clinical Practice,” Personalized Medicine Conference, CA.
“Value-based Reimbursement for Molecular Medicine,” AdvaMed Annual Meeting, DC.
“Genomics and Diagnostic Development,” AACC Personalized Medicine Conference, MO.
“Advocacy & Government Affairs Best Practices” PhaRMA Conference, CA.
“Intellectual Property in Life Sciences, “Lecture University of Maryland School of Law, MD.
“Personalized Medicine: Public Policy Issues,” U.S. House of Representatives Cannon Room
Briefing, 21st Century Coalition. Live CSPAN Broadcast, Washington, DC.
“Patient Advocacy: State Sponsored Organizations in China,” China.

1. Managing the Diabetes Epidemic, Scientific Review, P. Terry, Scientia Advisors, October 2011.
2. It’s My Life: A New Revolution, Patient Power. ISBN-10: 90-5911-538-4 2007.
3. Genomics in Cancer Care. A Patient Advocates Guide to Applied Genomics. Research
Advocacy Network. The Advocacy Training Institute. RAN Publishing 2006.
4. Cancer Genomics Advocacy Summit Manuscript. Genetic Alliance Publishing. 2006.
5. Ethical Guidelines for Nutrigenomics. Canadian Program in Genomics and Health. 2004.
6. My Very Own Medicine: What Must I Know? Information Policy for Pharmacogenetics,
ISBN: 0-9545187-0-5. Department of Public Health, University of Cambridge. 2003.
7. Populations and Genetics: Legal and Socio-Ethical Perspectives. ISBN 90 04 13678 9.
Leiden/Boston: Martinus Nijhoff, 2003.
8. Terry P. Perspective: To Pay or Not to Pay? Genetic Testing, Vol 20, No 2, Pg. 1–2. 2016.
9. Uitto J, Váradi A, Bercovitch L, Terry PF, Terry SF. Pseudoxanthoma Elasticum: Progress in Research
Toward Treatment: Summary of the 2012 PXE International Research Meeting. Invest Dermatol. 2013
Jun;133(6):1444-9. doi: 10.1038/jid.2013.20. PMID: 23673496.
10. K. Baxter, E. Horn, N. Gal-Edd, K. Zonno, J. O’Leary, P.F. Terry, S. F. Terry, An End to the Myth: There is no drug development pipeline. Science Transnational Medicine. 5, 171cm1.
11. Terry SF, Terry PF. Power to the people: participant ownership of clinical trial data. Sci Transl Med. YZ 9;3(69):69cm3. PMID: 21307299 2011.
12. Sharon F Terry, Elizabeth J Horn, Joan Scott, & Patrick F Terry, Special Report: Genetic Alliance Registry and BioBank: a novel disease.

1. with Eric Green (NIH National Human Genome Research Institute) Exogenic non-coding functional elements in comparative genomic studies of ABCC6/MRP6.
2. with Michael Gottesman (NIH National Cancer Institute): Cellular expression analysis of the MRP6 protein in pseudoxanthoma elasticum.
3. with Bercovitch L (Brown University), Uitto J (Jefferson Medical College), Terry SF & Terry PF (PXE International): Genotype / Phenotype Correlation—Mutational Analysis.
4. with Dean, Michael (NIH National Cancer Institute): analyzing genotypes in families to determine the cause of the apparent gender skew in pseudoxanthoma elasticum.
5. with Varadi, Andras (Hungarian Academy of Science): Determination of the transported substrate in ABCC6/MRP6 and functional protein characterization.
6. with Arias, Win (Tufts University/NICHD-NIH): studies of the liver involvement in PXE.
7. with Bercovitch L (Brown University), Campbell J (University of Massachusetts Medical School),
Weinstock M (Brown University School of Medicine) Terry PF (PXE International): An epidemiological study of pseudoxanthoma elasticum (funded by PXE International, Inc., The Harold Simmons Foundation and the Gadesen Foundation).
8. with Bercovitch L (Brown University), Ronchetti I (U. of Modena), Terry P (PXE International): Carriers of PXE exhibit a phenotype as a result of being obligate carriers.
9. with Smith R (Jackson Labs), Sundberg J (Jackson Labs), Terry P (PXE International): aged post breeding mice screening: Ocular PXE wild-type mouse models.
10. with Uitto J (Jefferson Med. Cntr.), Terry PF (PXE International), Terry SF (PXE International): PXE diagnostic testing efficacy and optimization.
11. with Transgenomic, Inc., F. Frueh, N. Taylor, J. Breen, M. A. Marino, & Terry PF (PXE International): ABCC6/MRP6 Diagnostic Assay Collaboration.
12. with Boyd C (University of Hawaii), Uitto J (Jefferson Med College), Viljoen D (Witwaterand SA), DePaepe A (Gent U. BE), Ronchetti I (Modena Italy), Terry PF (PXE Inter.), Terry SF (PXE Inter.): ABCC6/MRP6 Genotype/Phenotype program.
13. with Lebwohl (Mt. Sinai Hospital, NY), Genzyme Pharmaceuticals (Framingham, MA), Terry S (PXE Inter.): Therapeutic Intervention Clinical Trials for Renagel® to reverse phenotypic manifestations of Pseudoxanthoma elasticum.
14. with E. Chu (NIH Bethesda, MD), Genentech Inc. (San Fran, CA), Terry S (PXE Inter): Therapeutic Intervention Trial for Herceptin® to reverse phenotypic manifestations of PXE.
15. with S. Terry, R. Geigle, and R. Strongin (Polidais), US Molecular Diagnostics Regulation and Oversight Policy Recommendations for U.S. Federal Authorities.

Faculty, Personalized Medicine MBA Program, Ludwig-Maximilian, Munchen, Germany.
Faculty, Hon. Professor of Medical Sciences, Hebei United U., Tangshan, China.

Advisor, National Human Genome Research Institute, National Institutes of Health.
Advisor, Center for Medical Technology Policy, BCBS and California Healthcare Foundation.
Advisor, Laboratory Standards Institute, Genomics and Personalized Health, Genome Canada.
Advisor, The Medical Technology Learning Institute, Washington, DC.
Advisor, Genetics and Public Policy Center, Johns Hopkins U., Baltimore, MD.
Advisor, Biotechnology Grants Reviewer, Massachusetts Life Science Program.
Special Advisor, NIH-National Human Genome Research Institute, Bethesda, MD.
Special Advisor, Alamo Breast Cancer Foundation, San Antonio, TX.
Special Advisor, Translating Genomics to Health, Institute of Medicine, Wash., DC.

Business Advisor, InVitae Corporation, San Francisco, CA.
Business Advisor & Board Member, Inivata Ltd, Cambridge, UK.
Business Advisor, Grey Group Ventures Investing, Washington, DC.
Business Advisor, MeMed Diagnostics, Inc., Haifa, Israel.
Business Advisor, Foundation Medicine, Inc., Cambridge, MA.
Business Advisor, Synaps Diagnostics, Inc., Boston, MA.
Business Advisor, KEW Group, Inc., Cambridge, MA.
Business Advisor, MetaMark Genetics, Inc., Cambridge, MA.
Business Advisor, TcLand Expression, Inc. Paris, France.

Reviewer, Agency for Healthcare Research and Quality Evidence, Journal of Translational Medicine.
Reviewer, Patenting of Genomic & Proteomic Innovations, National Academy of Science.
Reviewer, Pharmacogenomics Report, Health and Human Services Administration.
Reviewer, College of Scientific Reviewers, Genome Canada Federal Grant Program.

Board Member, Co-founder, Director, PMC – Personalized Medicine Coalition, Wash., DC.
Board Member, Co-founder, EPEMED – European Personalized Medicine Diagnostics Assoc., Luxembourg.
Board Member, C21CM – Coalition for 21st Century Medicine, Wash., DC.
Board Member, President, International Genetic Alliance, Amsterdam, The Netherlands.
Board Member, National Association of Healthcare Reimbursement Professionals Chicago, IL.
Board Member, Journal of Translational Medicine, BioMed, London, UK.
Board Member, VP for Translational Research, Genetic Alliance Registry & Biobank, Wash., DC.
Board Member, Sirius Genomics, Inc., Vancouver, BC, Canada.
Board Member, Vice President, The BioLogos Foundation, San Diego, CA.
Board Member, University of Maryland Parent Council, College Park, MD.
Board Member, Director, University of Maryland Advisory Committee, College Park, MD.
Board Member Institutes of Medicine (IoM) — Genomics Roundtable, Wash., DC.
Board Member, IoM – Excellence in Translational Research Committee, Wash., DC.
Board Member-Alt, American Clinical Laboratory Association, Wash., DC.
Board Member, Membership Committee, Personalized Medicine Coalition, Wash., DC.
Board Member, Co-chair, Landscape Analysis, Personalized Medicine Coalition, Wash., DC.
Board Member, Founder, Coalition of Advocates for Research on the Eye, Wash., DC.
Board Member, Founder, International Lions Club, Sharon, MA/Boston Chapter.

Committee Member, Education Committee, American Society of Human Genetics, Wash., DC.
Committee Member, RTMD Committee, BIO—Biotechnology Industry Organization, Wash., DC.
Committee Member, Industry/Government Relations Committee, BayBIO Association, Wash., DC.
Committee Member, FDA Committee, American Clinical Laboratory Association, Wash., DC.
Committee Member, Diagnostics Taskforce Advisory Group, AdvaMed Assoc., Wash., DC.
Committee Member, Chair, Diagnostics Committee, Personalized Medicine Coalition, Wash., DC.
Committee Member, Co-chair, Public Policy Committee, Personalized Medicine Coalition, Wash., DC.
Committee Member, Professional Advisory Board, Genetic Alliance, Wash., DC.
Committee Member, Work Group Chair, NIH – Genetic Resources on the Web, Wash., DC.
Committee Member, Vice President, New Friends of the Playground, Town of Sharon, MA.
Committee Member, Recreation Advisory Committee, Town of Sharon, MA.
Committee Member Committee, Consumer Issues, Am. Society of Human Genetics, Wash., DC.