Last Posted: Jan-06-2017 0PM
Data Sharing expanded expanded
Last Posted: Jan 05, 2017
- Laboratory and clinical genomic data sharing is crucial to improving genetic health care: a position statement of the American College of Medical Genetics and Genomics
ACMG Board of Directors, Genetics in Medicine, January 5, 2017 - Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.
Langhof Holger et al. European journal of human genetics : EJHG 2016 Dec - Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes: Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration.
et al. Atherosclerosis. Supplements 2016 Dec - Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions.
Smith Maureen E et al. BMC medical research methodology 2016 Nov 16(1) 162 - DATA SHARING AND REPRODUCIBLE CLINICAL GENETIC TESTING: SUCCESSES AND CHALLENGES.
Yang Shan et al. Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing 2016 22166-176 - A survey of current practices for genomic sequencing test interpretation and reporting processes in US laboratories.
O'Daniel Julianne M et al. Genetics in medicine : official journal of the American College of Medical Genetics 2016 Nov - Harmonizing the interpretation of genetic variants across the world: the Malaysian experience.
Hassan Nik Norliza Nik et al. BMC research notes 2016 Feb 9125 - 'IRDiRC Recognized Resources': a new mechanism to support scientists to conduct efficient, high-quality research for rare diseases.
Lochmüller Hanns et al. European journal of human genetics : EJHG 2016 Oct - Geneticists should offer data to participants
S Nelson, Nature, November 1, 2016 - The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues.
Charlebois Kathleen et al. PloS one 2016 (10) e0164347 - Biospecimen Sharing Among Hispanic Women in a Safety-Net Clinic: Implications for the Precision Medicine Initiative.
Nodora Jesse N et al. Journal of the National Cancer Institute 2017 Feb 109(2) - Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.
Wang Shuang et al. Annals of the New York Academy of Sciences 2016 Sep - Barriers to clinical adoption of next generation sequencing: Perspectives of a policy Delphi panel.
Messner Donna A et al. Applied & translational genomics 2016 Sep 1019-24 - BRCA Share: A Collection of Clinical BRCA Gene Variants.
Beroud Christophe et al. Human mutation 2016 Sep - Data Sharing at a Crossroads
F Rockhold et al, NEJM, September 21, 2016 - The Importance — and the Complexities — of Data Sharing
JM Drazen et al, NEJM, September 21, 2016
From Implementation Database
This database focuses on state and national activities that integrate genomics into public health programs and clinical practice
- The Ohio Plan to Prevent Heart Disease and Stroke 2008-2012
[Disease: Heart Disease|Stroke|Familial Hypercholesterolemia; Type: Data|Policy|Program; State: Ohio] - BRCA 1/2 Surveillance in Michigan, 2008-2012[PDF 772.97 KB]
[Disease: Breast Cancer|Ovarian Cancer; Type: Data|Program; State: Michigan]
From Guideline Database
This database contains updated guidelines, policies and recommendations on genomic research and practice, as provided by professional organizations, federal advisory groups, expert panels and policy groups.
- International Charter of principles for sharing bio-specimens and data.
Published 2015 - Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.
Published 2015 (International Stem Cell Forum Ethics Working Party)
From HuGE Literature Finder Database
This database contains published literature on genetic associations and other human genome epidemiology
- BRCA Share: A Collection of Clinical BRCA Gene Variants.
Human mutation 2016 Sep .
Beroud Christophe, Letovsky Stanley I, Braastad Corey D, Caputo Sandrine M, Beaudoux Olivia, Bignon Yves Jean, De Paillerets Brigitte Bressac-, Bronner Myriam, Buell Crystal M, Collod-Béroud Gwenaëlle, Coulet Florence, Derive Nicolas, Divincenzo Christina, Elzinga Christopher D, Garrec Céline, Houdayer Claude, Karbassi Izabela, Lizard Sarab, Love Angela, Muller Danièle, Nagan Narasimhan, Nery Camille R, Rai Ghadi, Revillion Françoise, Salgado David, Sévenet Nicolas, Sinilnikova Olga, Sobol Hagay, Stoppa-Lyonnet Dominique, Toulas Christine, Trautman Edwin, Vaur Dominique, Vilquin Paul, Weymouth Katelyn S, Willis Alecia, , , , Eisenberg Marcia, Strom Charles - Association of the OPRM1 Variant rs1799971 (A118G) with Non-Specific Liability to Substance Dependence in a Collaborative de novo Meta-Analysis of European-Ancestry Cohorts.
Behavior genetics 2015 Sep .
Schwantes-An Tae-Hwi, Zhang Juan, Chen Li-Shiun, Hartz Sarah M, Culverhouse Robert C, Chen Xiangning, Coon Hilary, Frank Josef, Kamens Helen M, Konte Bettina, Kovanen Leena, Latvala Antti, Legrand Lisa N, Maher Brion S, Melroy Whitney E, Nelson Elliot C, Reid Mark W, Robinson Jason D, Shen Pei-Hong, Yang Bao-Zhu, Andrews Judy A, Aveyard Paul, Beltcheva Olga, Brown Sandra A, Cannon Dale S, Cichon Sven, Corley Robin P, Dahmen Norbert, Degenhardt Louisa, Foroud Tatiana, Gaebel Wolfgang, Giegling Ina, Glatt Stephen J, Grucza Richard A, Hardin Jill, Hartmann Annette M, Heath Andrew C, Herms Stefan, Hodgkinson Colin A, Hoffmann Per, Hops Hyman, Huizinga David, Ising Marcus, Johnson Eric O, Johnstone Elaine, Kaneva Radka P, Kendler Kenneth S, Kiefer Falk, Kranzler Henry R, Krauter Ken S, Levran Orna, Lucae Susanne, Lynskey Michael T, Maier Wolfgang, Mann Karl, Martin Nicholas G, Mattheisen Manuel, Montgomery Grant W, Müller-Myhsok Bertram, Murphy Michael F, Neale Michael C, Nikolov Momchil A, Nishita Denise, Nöthen Markus M, Nurnberger John, Partonen Timo, Pergadia Michele L, Reynolds Maureen, Ridinger Monika, Rose Richard J, Rouvinen-Lagerström Noora, Scherbaum Norbert, Schmäl Christine, Soyka Michael, Stallings Michael C, Steffens Michael, Treutlein Jens, Tsuang Ming, Wall Tamara L, Wodarz Norbert, Yuferov Vadim, Zill Peter, Bergen Andrew W, Chen Jingchun, Cinciripini Paul M, Edenberg Howard J, Ehringer Marissa A, Ferrell Robert E, Gelernter Joel, Goldman David, Hewitt John K, Hopfer Christian J, Iacono William G, Kaprio Jaakko, Kreek Mary Jeanne, Kremensky Ivo M, Madden Pamela A F, McGue Matt, Munafò Marcus R, Philibert Robert A, Rietschel Marcella, Roy Alec, Rujescu Dan, Saarikoski Sirkku T, Swan Gary E, Todorov Alexandre A, Vanyukov Michael M, Weiss Robert B, Bierut Laura J, Saccone Nancy - Folic acid supplementation use and the MTHFR C677T polymorphism in orofacial clefts etiology: An individual participant data pooled-analysis.
Birth defects research. Part A, Clinical and molecular teratology 2013 Aug 97 (8): 509-14.
Butali Azeez, Little Julian, Chevrier Cécile, Cordier Sylvian, Steegers-Theunissen Regine, Jugessur Astanand, Oladugba Bola, Mossey Peter - The FTO A/T polymorphism and elite athletic performance: a study involving three groups of European athletes.
PloS one 2013 8 (4): e60570.
Eynon Nir, Nasibulina Emiliya S, Banting Lauren K, Cieszczyk Pawel, Maciejewska-Karlowska Agnieszka, Sawczuk Marek, Bondareva Elvira A, Shagimardanova Roza R, Raz Maytal, Sharon Yael, Williams Alun G, Ahmetov Ildus I, Lucia Alejandro, Birk Ru
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