Genetic Alliance Staff Publications

Genetic Alliance Staff Publications

Genetic Alliance staff regularly give presentations around the country and the globe. The maps below represent our presentations in 2010.

A sample of Genetic Alliance staff publications:

March 2011
Terry SF, Horn EJ, Scott J, and Terry PF. Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution. Personalized Medicine. Vol. 8 No. 2:207-213.
December 2010
Field A, Krokosky A, Terry SF. Direct-to-Consumer Marketing of Genetic Tests: Access Does Not Reflect Clinical Utility. Genetic Testing and Molecular Biomarkers. Vol. 14, No. 6:  731-732.
November 2010
Terry SF, Krokosky A. Rare Conditions: Where Do Primary Care and Genetic Diseases Intersect? JAAPA.
October 2010
Krokosky A, Terry SF. International Standard Cytogenomic Array Consortium. Genetic Testing and Molecular Biomarkers. Vol. 14, No. 5:  585-585.
June 2010
Betsou F, Rimm DL, Watson PH, Womack C, Hubel A, Coleman RA, Horn EJ, Terry SF, Zeps N, Clark BJ, Miranda LB, Hewitt RE, and Elliott GD. What Are the Biggest Challenges and Opportunities for Biorepositories in the Next Three to Five Years? Biopreservation and Biobanking.Vol. 8, No. 2: 81-88.

Horn EJ, Bialick JF, and Terry SF. Landscape Analysis of Registries and Biobanks: A Tool for Disease Advocacy Organizations to Enhance Translational Research Systems. Biopreservation and Biobanking. Vol. 8, No. 2: 115-117.
May 2010
Horn EJ, Mancuso T, and Terry SF. Disease advocacy organization-initiated biorepositories and registries – an exploratory survey. (Poster) ISBER 2010 Annual Meeting, Rotterdam, The Netherlands.

March 2010
Horn EJ, Landy DC, Sharp RR, and Terry SF. Disease advocacy organizations may accelerate research through registries and biobanks. (Poster) 2010 ACMG Annual Clinical Genetics Meeting, Albuquerque, NM.

Sharp RR, Landy DC, Horn EJ, and Terry SF. How disease-advocacy groups participate in clinical research: results from a national survey of organizations for genetic disorders. (Poster) 2010 ACMG Annual Clinical Genetics Meeting, Albuquerque, NM, March 24-28, 2010.
January 2010
Fullerton S, Anderson N, Guzauskas G, Freeman D, and Fryer-Edwards K. Meeting the Governance Challenges of Next-Generation Biorepository Research. Science Translational Medicine 2010; 2(15)
November 2009
Weaver M, Reed K, Chappelle A, Furlong P, Clapp K, Miller R, Blitze, M, Greene C, Terry SF, et. al., Access to Credible Genetics Resources: What does that mean for my practice? (Poster) National Society of Genetic Counselors Annual Educational Conference.

Zonno K, Baker D, Chappelle A, Cornell A, and Terry SF. Addressing Issues of Privacy and Discrimination: Needs of genetic counselors. (Poster) National Society of Genetic Counselors Annual Educational Conference.
October 2009
Terry SF, Bialick J, Zonno K, and Horn L. Landscape analysis of biobanks and registries as a tool to enhance translational research systems. (Poster) 59th Annual Meeting of the American Society of Human Genetics, Honolulu, HI.

Chappelle A, Bialick J, and Terry SF, Resource Repository: Revolutionizing Access to Information (Poster) American Society of Human Genetics Annual Meeting.

Reed K, Weaver M, Chappelle A, Furlong P, Clapp K, Miller R, Blitzer, M, Green, C, and Terry SF. Who said it? When did they say it? How did they know?: Deciding when to trust or trash genetics health information. (Poster) 59th Annual Meeting of the American Society of Human Genetics.
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