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    Archived pages: 340 . Archive date: 2013-11.

  • Title: Home | Public Population Project in Genomics and Society
    Descriptive info: .. Jump to navigation.. Public.. Population.. Project in.. Genomics.. and Society.. Search form.. Search.. Biobank Lexicon.. About P3G.. At a glance.. Charter of Principles.. Board.. International Steering Committee.. Partner projects.. Annual report.. FAQ.. Newsletter.. Our publications.. Archives.. Resources.. Biobank Toolkit.. Biobank Lifespan.. Biobank HUB.. Biobank Training.. Biobank Catalogues.. BRIF.. Programmes.. Membership.. Institutional members.. Individual members.. Events.. News.. Contact Us.. Ipac.. International Policy interoperability and data Access Clearinghouse.. Toolkit.. Search biobanking tools by name, category or type.. Lifespan.. Browse through the different phases and steps of the biobanking lifecycle.. HUB.. Discuss, exchange and collaborate with experts around the world.. Training.. Access tutorials and information sessions.. Catalogues.. Search  ...   learn more about these modules.. HandsOn: Biobanks 2013.. November 21, 2013.. World Forum, The Hague.. INSERM Workshop - Data-sharing in biomedical and health research: legal protection, ethical issues and for governance.. March 24, 2014.. Bordeaux, France.. Complete Calendar.. OFFICIAL LAUNCH OF THE NEW IPAC RESOURCE.. Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform.. P3G Generic Access Agreement.. Global Alliance Organizing Committee.. More news.. Become a P3G member.. Sign-up to receive our newsletter.. Username.. *.. Password.. Request an account.. Request new password.. Contact us.. Terms and Conditions.. Privacy Policy.. Site Map.. © 2013 – P3G – All Rights Reserved..

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  • Title: Biobank Lexicon | Public Population Project in Genomics and Society
    Descriptive info: The aim of this lexicon is to pave the way for consensus on terms within the field of population biobanks.. The procedure for defining the terms in this lexicon is based on information derived from selected texts describing international norms and the combined experience of the lexicon team.. The definitions are formulated to be as simple and straightforward as possible and will be updated.. Comments and suggestions about the lexicon,.. email us.. A.. B.. C.. D.. E.. F.. G.. H.. I.. J.. K.. L.. M.. N.. O.. P.. Q.. R.. S.. T.. U.. V.. W.. X.. Y.. Z.. Aliquot.. A portion of a sample of biological material that has been divided into separated parts.. Anonymization.. The irreversible removal of personal identifiers from data or samples, such that no specific individual can be identified.. Audit.. A documented review of procedures in order to evaluate adherence to written standards operating practices (SOPs) or laws and regulations (adapted from ISBER Best Practices, 2005).. Biobank/biorepository.. An organized collection of human biological material and associated information stored for one or more research purposes.. Bioethics advisory body.. An independent group to advise the biobank on ethical matters.. Coding.. Substituting a code for personally identifying information in such a way that linkage is only possible through a key.. Cohort.. A group of individuals identified by a common characteristic (e.. g.. demographic, exposures, illness.. ).. Confidentiality.. The protection of information shared in a relationship of trust.. Conflict of interest.. Connections or interests (personal, social, financial or professional) that influence or, are perceived to influence, professional integrity and independance.. Consent/informed consent.. Voluntary and informed expression of the will of a person, or his/her legal representative, concerning the use(s) of their samples and data.. Depending on the nature of the biobank, such consent can take various forms (e.. broad, specific, implicit, proxy, reconsent.. Custodian.. Entity responsible for managing the biobank, including control over its release, use and access as well as sample/information destruction.. Custodianship does not necessarily equate with ownership over the biobank contents.. Data Trustee/Keyholder/Custodian.. An independent third party, which controls information used to identify data and samples held within a biobank.. The trustee/keyholder/custodian acts as an intermediary between the persons maintaining the biobank and the individuals who supply their tissues and information.. Only the trustee/keyholder/custodian can link the donor's personal information with any samples or information held by the biobank.. Data linkage.. The task of linking together records representing the same entity (eg participant, protein, genetic information etc) from one or more data sources.. Donor.. Living or deceased individual who is the source of a sample or about whom the biobank information relates.. Ethics review committee/research ethics committee.. An independent committee for the ethical review of biobank activities and research.. Feedback.. Return of general or individual results to the  ...   and identification.. Knowledge transfer.. Communication of general results and other information to the population.. Longitudinal study.. Research studies involving repeated observations of the same entity over time.. In the biobank context, longitudinal studies sample a group of people in a given time period, and study them at intervals by the acquisition and analyses of data and/or samples over time.. Material/data transfer agreement.. A binding legal agreement between the provider of research materials and the recipient of the materials/data that sets forth conditions of transfer and use (adapted from NCI, 2006).. Participant.. The individual who provides the data and biological sample (OECD, 2006).. Personal data.. Any information that directly or indirectly identifies a specific individual.. Phenotype.. The observable or measurable traits of an individual as produced by its genotype and the environment (Nuffield, 2006).. Population biobank.. A population biobank is a collection of biological materials that has the following characteristics:.. The collection has a population basis; It is established, or has been converted, to supply biological materials or data derived therefrom for multiple future research projects; It contains biological materials and associated personal data which may include or be linked to genealogical, medical or lifestyle data and which may be regularly updated; It receives and supplies materials in an organized manner (Council of Europe, 2006).. Privacy.. The right and freedom to control information about oneself.. Prospective harmonization.. Aims to influence study design and conduct in the early stages in order to make subsequent data and sample pooling more efficient.. Public domain.. The public domain comprises the body of knowledge and innovation in relation to which no person or other legal entity can establish or maintain proprietary interests (adapted from Wikipedia).. Public participation.. The active involvement of a population or sub-population in the development, management and governance of a biobank (e.. engagement, consultation, communication, debate inclusion of stakeholders.. Quality.. Conformity of a biospecimen or process with preestablished specifications or standards (ISBER 2005).. Retrospective harmonization.. Aims to optimize the use of data and samples already collected or entered in different ways.. Return of results.. Return of results and data by researchers to the population biobank.. Sample.. A biological specimen from the human body including e.. tissue, blood, blood components, cell lines and biopsies.. Secondary use(s).. Using data or samples in a way that differs from the original purpose.. Surveillance.. Systematic collection, monitoring and dissemination of health data to assist in planning, implementation and evaluation of public health.. Traceability.. The ability to locate a sample during any step of its donation, collection, processing, testing, storage, and disposition (ISBER, 2005).. Unidentifiable.. Samples and data for which identifiable information was not collected, or, if collected, was not maintained and cannot be retrieved (adapted NCI, 2006).. Virtual biobank.. A controlled (access) database on samples stored at different locations..

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  • Title: About P3G | Public Population Project in Genomics and Society
    Descriptive info: The Public Population Project in Genomics and Society (P.. 3.. G) is a not-for-profit consortium that provides the international research community with access to the expertise, resources and innovative tools for health and social sciences research.. G works with researchers from around the world to:.. Encourage.. collaboration between researchers and biobankers..  ...   activities of studies, biobanks, research databases and other similar health and social research infrastructures.. Facilitate.. the transfer of knowledge and provide training.. G brings the genomics and health research community together via conferences summer schools as well as online tools.. Principles of transparency and collaboration are integral to the P.. G approach..

    Original link path: /about-p3g
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  • Title: At a glance | Public Population Project in Genomics and Society
    Descriptive info: Research in genomics and health and accompanying technologies generates large, well-characterized data sets from population samples.. These studies will allow the biomedical community to unravel the complex genetic and environmental interactions responsible for most common diseases.. The Public Population Project in Genomics and Society (P³G) is an international consortium dedicated to the development and management of a multi-disciplinary infrastructure that can compare and merge results from studies, biobanks, research databases and other similar health and social research infrastructures conducted around the world.. Through its tools, support and network, P³G can help the international research community to consider more effective health care strategies aimed at disease prevention, and tailoring treatments and promoting the health of individuals, families and communities.. Mission.. P³G's mission is  ...   of the scientific, technical, ethical, legal, social environmental, economic and behavioral issues that need to be addressed;.. Promoting pre-competitive data sharing while respecting all applicable legal and ethical obligations; and.. Supporting and enabling wide access to research tools and expertise.. An International Consortium.. P³G is an international consortium comprised of: Institutional members that conduct, use or collaborate with or plan to be involved in such fashion with health studies, biobanks, research databases and other similar health research infrastructures; and, of individual members from academic, public and private organizations committed and capable of furthering the objectives of P³G.. P³G has achieved a critical mass to form the principal international body for the harmonization of public population studies in genomics and society.. Organization.. Our sponsors..

    Original link path: /about-p3g/glance
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  • Title: Charter of Principles | Public Population Project in Genomics and Society
    Descriptive info: G CHARTER OF FUNDAMENTAL PRINCIPLES.. G) aspires to the highest standards of ethical comportment and research integrity.. The fundamental principles that underpin its activities are:.. PROMOTION OF THE COMMON GOOD.. G will optimise the benefits of collaborative research for the benefit of all.. RESPONSIBILITY.. Protection of the interests of all affected stakeholders including families, groups, populations, researchers and research sponsors is the highest priority.. Every effort will be made to respond to the concerns of stakeholders in a timely and appropriate manner.. MUTUAL RESPECT.. The development and sustainability of P..  ...   diversity and the scientific specificity of the projects involved.. ACCOUNTABILITY.. All standards, processes and procedures will be transparent and clear, developed on the basis of consensus, and aim to create best practice in the networking of population genomics resources.. PROPORTIONALITY.. All research materials (such as data and samples) must be protected to the highest standards of privacy and propriety, while at the same time allowing and promoting the free exchange of ideas, datasharing and openness for the benefit of all.. Adopted by P.. G Board of Directors: March 23, 2007..

    Original link path: /about-p3g/charter-principles
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  • Title: Board | Public Population Project in Genomics and Society
    Descriptive info: Current.. Board Members:.. Should members have any issues or questions that you would like to raise before the Board, please contact the Secretariat at.. secretariat@p3g.. org..

    Original link path: /about-p3g/board
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  • Title: International Steering Committee | Public Population Project in Genomics and Society
    Descriptive info: Current International Steering Committee (ISC) members:.. Anthony J Brookes:.. bio.. Paul Burton:.. Rex Chisholm.. Isabel Fortier:.. Pat Goodwin:.. Jennifer Harris:.. Kristian Hveem.. Jane Kaye:.. Alistair Kent:.. Bartha Maria Knoppers:.. Klaus Lindpaintner:.. Julian Little:.. Peter Riegman:.. Samuli Ripatti.. Ronald Stolk:..

    Original link path: /about-p3g/international-steering-committee
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  • Title: Partner projects | Public Population Project in Genomics and Society
    Original link path: /about-p3g/partner-projects
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  • Title: Annual report | Public Population Project in Genomics and Society
    Descriptive info: Please click on the image below to view the 2012 P.. G Annual Report:..

    Original link path: /about-p3g/annual-report
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  • Title: FAQ | Public Population Project in Genomics and Society
    Descriptive info: WHAT IS P³G?.. The Public Population Project in Genomics and Society (P³G) is a not-for-profit international consortium dedicated to fostering collaboration between population genomics researchers.. This is done through the development of free and accessible research tools, resources and methods that help optimize and harmonize the design of biobank infrastructures and research projects.. P³G has built a global network of biobanks and experts representing the broad range of knowledge required to develop this field.. Working with this community of experts, P³G strives to optimize the design of biobanks and facilitate the harmonization of research materials, methods and studies by developing innovative approaches and tools capable of meeting the challenges of complex, cutting-edge genomic, epidemiological and environmental research.. Understanding that sharing information leads to scientific progress, P³G makes this knowledge freely available to the international scientific community through the P³G Observatory website.. With membership from over 40 countries - and growing - P³G benefits from a critical mass of experts and biobank leaders dedicated to shaping and improving all aspects in the field of population genomics.. P³G is guided by a.. WHY DOES P³G EXIST?.. The goal of population-based biomedical research is to improve health for individuals and populations.. Studying how genes interact with each other, environment and lifestyle is essential to better understanding diseases.. Efforts such as The Human Genome Project, the International HapMap Project, and the profusion of reports and studies addressing susceptibility genes have contributed to a pressing need to generate large, well-characterized data sets from population samples.. The collection and study of these samples helps the biomedical community unravel complex genetic and environmental interactions responsible for most common diseases.. The biomedical research community faces many distinctive challenges related to population studies, such as assembling the numbers of people necessary and comparing results.. Although this research has the potential to positively impact the health of populations around the world, it is costly and time-consuming.. By pooling together the results of well-designed studies,  ...   a publicly accessible knowledge database where users have access to tools, studies and other resources to optimize policymaking and the design of biobanks or facilitate harmonization and collaboration with other biobanks.. These tools and strategies are developed with and for the research community and benefits from hands-on field expertise of a roster of researchers.. P³G members are encouraged to share their findings, ideas, innovative tools and know-how with the broader research community through the P³G network, where tools are optimized and disseminated, building a powerful network of collaboration.. Principles of transparency and collaboration are integral to the P³G approach.. All P³G resources such as tools, research projects, publications, etc.. , are developed with input from the international P³G community and intended to help the entire biomedical community.. While P³G members share their knowledge, tools and methodologies, each study has distinctive traits and retains control over its data and samples.. Members may submit proposals of areas of study to the P³G Board which are consistent with P³G scientific goals and methods.. These are drafted by the International Steering Committee and submitted to the Board for approval.. WHAT IS THE P³G GOVERNANCE STRUCTURE?.. P³G is administered by an international Board of Directors elected by P³G Institutional members.. These members represent organizations conducting, using or collaborating with or planning to be involved in such fashion with health studies, biobanks, research databases and other similar health research infrastructures.. Funding for P³G was authorized following a review by an international review board.. By law, P³G is required to undergo an external financial audit at least once a year.. Moreover, P³G must submit scientific and financial reports to its funding agencies on a regular basis.. HOW IS P³G FUNDED?.. P³G is funded primarily by Genome Canada, Genome Québec and CIHR.. Additional sources of funding come from fees paid by Institutional memberships.. P³G is located at the RI-MUHC (Research Institute of the McGill University Health Centre) and hosted by McGill University..

    Original link path: /about-p3g/faq
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  • Title: Newsletter | Public Population Project in Genomics and Society
    Descriptive info: Please click on the image below to view the current P.. G Newsletter:.. Sign up for.. P3G Mailing List.. Email Address.. First Name.. Last Name..

    Original link path: /about-p3g/newsletter
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  • Archived pages: 340