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  • Blog - Human Variome Project
    has been an explosion in research to discover the function of each of the twenty thousand or so human genes Once the Human Genome Project the international effort to map the genes present in the human genome was completed a new global project was launched in 2006 to share information about genetic variation in clinical practice The Human Variome Project HVP acts as an umbrella organization actively engaging with partners and stakeholders in each country to ensure that genetic variation information generated during routine diagnostic and predictive testing is collected and shared The HVP is also instrumental in establishing and maintaining the standards systems and infrastructure that will embed the sharing of this knowledge in routine clinical practice 2 The United Nations Educational Scientific and Cultural Organization UNESCO serves as an important channel for the involvement of developing countries in the HVP as it did during the Human Genome Project One of the main goals of UNESCO is the development of international science that meets social needs in health food education and other standards of living This goal has become increasingly relevant in the Post 2015 Development Agenda 3 which aims to address these global challenges including the burden of diseases on the performance and growth of many nations particularly in developing countries where issues of public health are of major concern 4 Formed at the end of World War II UNESCO was one of numerous initiatives for international scientific cooperation undertaken by the nascent United Nations These scientific cooperation initiatives were seen as diplomatic opportunities to promote collaborations among nations in hopes of fostering peace and development The same sentiment is true today with the HVP one of the latest efforts by UNESCO to promote collaboration 0 Comments Continue reading Categories News Press Releases Statements Speeches Capacity Building Collaborating

    Original URL path: http://www.humanvariomeproject.org/blog/tags/tag/diplomacy.html (2016-02-10)
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  • Blog - Human Variome Project
    polycystic kidney disease Tay Sachs and many others Whilst the birds favourite food continues to be publications publications don t get the sand sorted into buckets fast enough There is a faster approach it just requires a different sort of food MA or microattribution Microattribution opens up the discovery of scientific knowledge to the crowd and is part of a much larger effort on behalf of the Human Variome Project to encourage the collection and sharing of genetic data on a global scale But there are many beaches around the world and connecting this data is a challenge in itself requiring governments universities companies health providers researchers and citizens to all work together to put forward the data they ve collected into a network from which everyone can learn from To learn more about the Human Variome Project and its role as a partner NGO of UNESCO check out this editorial in Nature Genetics Image sourced under Creative Commons via Flickr from jdrephotography 0 Comments The Human Variome Project Global Coordination in Data Sharing Posted by Casimiro Vizzini on Wednesday 01 April 2015 in Capacity Building This article originally appeared in Science Diplomacy on 19 March 2015 It is republished here with permission One way to address the global challenges of public health in developing countries is through international collaboration to share data It s important to do this not just for humanitarian reasons but because open information is at the heart of scientific progress One field in which this is particularly evident is genomic research which has made revolutionary progress in recent years Since the first genetic variation causing inherited disease sickle cell anemia was defined at the protein level sixty years ago 1 it has become possible to locate isolate sequence and clone individual genes Indeed there has been an explosion in research to discover the function of each of the twenty thousand or so human genes Once the Human Genome Project the international effort to map the genes present in the human genome was completed a new global project was launched in 2006 to share information about genetic variation in clinical practice The Human Variome Project HVP acts as an umbrella organization actively engaging with partners and stakeholders in each country to ensure that genetic variation information generated during routine diagnostic and predictive testing is collected and shared The HVP is also instrumental in establishing and maintaining the standards systems and infrastructure that will embed the sharing of this knowledge in routine clinical practice 2 The United Nations Educational Scientific and Cultural Organization UNESCO serves as an important channel for the involvement of developing countries in the HVP as it did during the Human Genome Project One of the main goals of UNESCO is the development of international science that meets social needs in health food education and other standards of living This goal has become increasingly relevant in the Post 2015 Development Agenda 3 which aims to address these global challenges including the burden of diseases

    Original URL path: http://www.humanvariomeproject.org/blog/tags/tag/unesco.html (2016-02-10)
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  • Blog - Human Variome Project
    and genomics in China Dr Casimiro Vizzini from the International Basic Science Program of the United Nations Scientific Educational and Cultural Organisation UNESCO and Mr Chris Arnold Chairman of the Human Variome Project International Limited Board addressed the delegates The Human Variome Project were further represented by Professor Garry Cutting HVPI Board member and Co Chair of the International Scientific Advisory Committee and Professor Peter Taschner member of the International Scientific Advisory Committee and Chair of the Gene Disease Specific Database Advisory Council Representatives from the UNESCO Beijing Office also attended the event Mr Zhonghua Gao from the Beijing China Health Huayang Institute of Gene Technology was appointed as the Director of the HVP China Node Working Committee The HVP China Node Working Committee had held a meeting on the day preceding the launch Professor Runlin Ma from the Institute of Genetics and Developmental Biology Chinese Academy of Sciences was elected as Chair of the Expert Committee of HVP China Node Working committee 加油 中国 0 Comments Categories News Press Releases Statements Speeches Capacity Building Collaborating Projects HVP Country Nodes China Czech Republic Republic of Korea South East Asia Regional USA United Kingdom Venezuela Ethical Legal Social Issues Microattribution Subscribe

    Original URL path: http://www.humanvariomeproject.org/blog/tags/tag/hvp-country-node.html (2016-02-10)
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  • Blog - Human Variome Project
    the Human Variome Project In essence the agreement sets out how the two will work together to assist WHO in achieving its goal of providing leadership in global health matters that relate to human genomics with a particular emphasis on service delivery and safety in low and middle income countries This marks a new initiative for WHO While it has always had a small program on genetics and health focusing mainly on genetic diseases for some time this new program marks a change in focus to the broader issue of human genomics and public health The public health implications of advances in human genetics and genomics are of increasing importance to all professionals working in the field Our agreement with WHO is a significant complement to our existing status as an NGO with operational status with UNESCO as it links the Project and our Consortium members to the world of international health WHO is responsible for the key issues affecting health including shaping international health research agenda setting norms and standards for health matters and assessing health trends The Human Variome Project s key contribution to these efforts will be to give a voice to the various health professionals working in human genetics and genomics particularly those in low and middle income countries where opportunities to shape policy are sometimes weak The key mechanism for this will be the HVP Country Nodes and the International Confederation of Countries Advisory Council The Project has 22 formally constituted Country Nodes together with another six countries that are in the process of seeking membership These are found in all regions of the world The interest in HVP Country Nodes is growing fast as researchers clinicians and health bureaucrats increasingly realise the importance of national bodies to oversee the transparent and open sharing of

    Original URL path: http://www.humanvariomeproject.org/blog/tags/tag/who.html (2016-02-10)
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  • Blog - Human Variome Project
    Microattribution Subscribe by Email Get fresh blog posts delivered straight to your inbox Subscribe Popular Posts Human Variome Project International Limited Response to the Global Alliance for Genomics and Health Draft Constitution African genomics projects highlighted at major international scientific meeting A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data South East Asian Node Launched in Malaysia Submission regarding the Draft NIH Genomic Data Sharing Policy Navigate

    Original URL path: http://www.humanvariomeproject.org/blog/blogger/listings/shan-zienolddiny-stami-no.html (2016-02-10)
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  • Human Variome Project on Target to Collect All Genetic Data - Blog - Human Variome Project
    to be sensitive to the different legal and ethical landscapes that are out there That s what makes the concept of HVP Country Nodes so powerful each country gets to control how their data is collected and how it is shared The Human Variome Project is an international consortium of clinicians geneticists and researchers from over 30 countries led by Professor Richard Cotton a world renowned expert in the area of genetic variation detection and data collection In the past weeks the Project has also announced a significant contribution of funds towards the global coordination of its work via a A 2 5 million grant by the Victorian State Government in Australia The support means that the Human Variome Project global Coordinating Office will be located in Melbourne Australia which is already one of the top five locations in the world for biotechnology The Human Variome Project is committed to reducing the burden of genetic disease on the world s population by providing standards systems and infrastructure for the sharing of information on all genetic variation mutations causing human disease The free and open sharing of information on genetic variation and its consequences among scientists and within society allows treatments to be delivered more effectively to patients and new treatments and cures to be developed Earlier this year Project participants met to discuss progress and plans at a meeting co organized by the United Nations Educational Scientific and Cultural Organisation UNESCO in Paris France The multidisciplinary nature of the Human Variome Project which includes scientists and practitioners from different disciplines allows for basic research findings to be accessible to and useful for clinicians and the people they serve said Walter Erdelen UNESCO Assistant Director General for Natural Sciences END New HVP Country Nodes Egypt and Belgium Create HVP Country Nodes

    Original URL path: http://www.humanvariomeproject.org/blog/human-variome-project-on-target-to-collect-all-genetic-data.html (2016-02-10)
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  • What is the Human Variome Project? - Blog - Human Variome Project
    billion today a single individual can sequence a full genome in two weeks for a few thousand dollars Spurred by technological advancements such as this the pace of new medical research findings is alarmingly fast But our ability to capture understand and share the vast amount of information that is being generated on a daily basis is not keeping up And when it comes to information such as what mutations cause what diseases that directly affects the well being of real people then our inability to keep up becomes disastrously evident The benefits If researchers clinicians genetic counsellors and affected families were given fast reliable access to accurate up to date and complete information on all mutations it will enable doctors to rapidly diagnose and inform patients with rare diseases allow new diagnostics assist researchers to develop new treatments and assist in uncovering the causes of common diseases such as breast cancer and asthma How it will be achieved The ultimate goal of the Human Variome Project is to provide a means of automatically sharing high quality data on every instance of genetic variation To achieve this the Human Variome Project is facilitating two avenues of collection both of which are being piloted successfully by critical field studies Gene Disease Specific Databases Some 1800 gene disease specific databases currently exist on the internet gathering variation data on specific genes and diseases from the published literature direct submission by research scientists and numerous other sources These databases provide a critical function of digital data curation ensuring that the data they provide is of a consistently high quality The Human Variome Project recognises the importance of these databases but is also aware that they cover a limited region of the genome The Human Variome Project is working to improve these existing databases and also encourage the creation of new ones to eventually cover all 20 000 human genes HVP Country Nodes HVP Country Nodes are genetic data repositories that are built funded and managed by the countries they service They collect variation data directly from diagnostic laboratories by interfacing with existing laboratory information systems and securely store this information in a central location accessible to the diagnostic and healthcare professionals of the country hosting each node The nodes serve three functions first and foremost they allow data to be shared amongst the diagnostic labs and clinics in any one country to support genetic testing services for patients secondly data from the Nodes can also be shared with gene disease specific databases and central variation depositories e g NCBI s dbGaP in a manner that complies with that country s existing privacy legislation Finally these repositories allow the genetic burden of disease in individual countries to be quantified which in turn can be used to better target healthcare planning and policy development Summary The bringing together of gene variant data together with its phenotypic information is essential for proper genetic healthcare delivery particularly as we move into the era of personalised medicine Now

    Original URL path: http://www.humanvariomeproject.org/blog/what-is-the-human-variome-project.html (2016-02-10)
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  • Project releases Project Roadmap 2012-2016 - Blog - Human Variome Project
    and targets for Project activities and lays out strategies for their attainment The Roadmap is available from the Human Variome Project website Human Variome Project announces major grant progra Major Grant Program Announced by Human Variome Pro Comments No comments made yet Be the first to submit a comment Leave your comment Don t forget to log in If you re a member of the Human Variome Project Consortium you might want to log in before posting a comment Not a member Why not sign up Guest Wednesday 10 February 2016 Captcha Image I have read and agree to the Terms Conditions Categories News Press Releases Statements Speeches Capacity Building Collaborating Projects HVP Country Nodes China Czech Republic Republic of Korea South East Asia Regional USA United Kingdom Venezuela Ethical Legal Social Issues Microattribution Subscribe by Email Get fresh blog posts delivered straight to your inbox Subscribe Popular Posts Human Variome Project International Limited Response to the Global Alliance for Genomics and Health Draft Constitution African genomics projects highlighted at major international scientific meeting A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data South East Asian Node Launched in Malaysia Submission regarding the Draft NIH Genomic Data

    Original URL path: http://www.humanvariomeproject.org/blog/project-releases-project-roadmap-2012-2016.html (2016-02-10)
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