This document introduces selected Key Health
Organizations/Projects involved in Biobanking.
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Selected Domains in which Organizations Are
Involved |
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Organization/Project |
General Mission |
Guidelines and Scientific
Tools Creation to Support Biobanks |
Networking and Harmonization |
Scientific Discoveries |
Biobanking |
| Multi-purpose and Governmental Organizations |
International Agency for Research on Cancer (IARC) |
- Promote international collaboration in cancer research.
- Identify cancer causes so that preventive measures may be
adopted and the burden of disease and associated suffering can be
reduced.
- Coordinate research across countries and organizations.
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| National Cancer Institute (NCI) |
- Support and coordinate research projects.
- Conduct research in its own laboratories and clinics.
- Support education and training.
- Support a national network of cancer centres.
- Collaborate with organizations and other national and
foreign institutions engaged in cancer research and training
activities.
- Collect and disseminate information on cancer.
- Support construction of laboratories, clinics, and related
facilities necessary for cancer research.
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| National Center for Biotechnology
Information (NCBI) |
- Create public databases.
- Conduct research in computational biology.
- Develop software tools for analyzing genome data.
- Disseminate biomedical information.
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| National Human Genome Research Institute
(NHGRI) |
- Contribute to the International Human Genome Project, which
had as its primary goal the sequencing of the human genome (completed
in April 2003).
- Help towards understanding the structure and function of the
human genome and its role in health and disease. To that end NHGRI:
- Supports the development of resources and technology that will
accelerate genome research and its applications for human health.
- Studies the ethical, legal and social implications (ELSI) of genome
research.
- Supports the training of investigators and the dissemination of
genome information to the general public and health professionals.
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| Organisation for Economic Co-operation
and Development (OECD) |
To bring together the governments of countries committed to
democracy and the market economy from around the world to:
- Support sustainable economic growth.
- Boost employment.
- Raise living standards.
- Maintain financial stability.
- Assist the economic development of other countries.
- Contribute to growth in world trade.
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| World Health Organization (WHO) |
- Provide leaderships on global health matters.
- Shape the health agenda.
- Set norms and standards.
- Articulate evidence-based policy options.
- Monitor and assess health trends.
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| Science-led Organizations |
Biobanking and Biomolecular Resources
Research Infrastructure (BBMRI) |
- Sustain secure access to the biological resources required
for health-related research and development intended to improve the
prevention, diagnosis and treatment of diseases and to promote the
health of the citizens of Europe.
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| Consensus measures for Phenotypes and
eXposures (PhenX) |
- Contribute to the integration of genetics and epidemiologic
research.
- Develop a recommended minimal set of high priority measures
for use in Genome-wide Association Studies (GWAS) and other
large-scale genomic research efforts.
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| Database of Genotypes and Phenotypes
(dbGap) |
- Archive and distribute results of studies that have
investigated the interaction of genotype and phenotype.
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| European Bioinformatics Institute (EBI) |
- Provide freely available data and bioinformatics services to
all facets of the scientific community in ways that promote
scientific progress.
- Contribute to the advancement of biology through basic
investigator-driven research in bioinformatics.
- Provide advanced bioinformatics training to scientists at
all levels, from PhD students to independent investigators.
- Help disseminate cutting-edge technologies to industry.
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| European Clinical Research
Infrastructures Network (ECRIN) |
- Bridge the fragmentation of clinical research in Europe
through the interconnection of national networks of clinical research
centres and clinical trial units.
- Provide extension of infrastructure networks in other member
states and encourage the establishment of new national networks for
further connection to ECRIN.
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| Genome-based Research and Population
Health International Network (GRaPH-Int) |
- Promote an international collaboration that facilitates the
responsible and effective integration of genome-based knowledge and
technologies into public policies, programmes, and services for
improving population health.
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| Genotype-to-Phenotype Consortium
(Gen2Phen) |
- Unify human- and model-organism genetic variation databases
towards increasingly holistic views into Genotype-To-Phenotype (G2P)
data, and to link this system into other biomedical knowledge sources
via genome browser functionality.
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| Human Genome Epidemiology Network
(HuGENet) |
- Assess the impact of human genome variations on population
health and how genetic information can be used to improve health and
prevent disease.
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| International HapMap Project (HapMap) |
- Identify and catalogue genetic similarities and differences
in human beings.
- Provide information that other researchers can use to link
genetic variants to risks for specific illnesses, which will lead to
new methods of preventing, diagnosing, and treating disease.
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| International Society for Biological and
Environmental Repositories (ISBER) |
- Create opportunities for sharing ideas internationally and
harmonizing approaches to evolving challenges in biobanking and
repository operation.
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| OnCore UK |
- Empower research using human biosamples to find new and
effective means of preventing, detecting or treating cancer.
- Improve access by researchers to the human biosamples they
require for their work.
- Facilitate an environment in which patients, the public,
health professionals, researchers, research funders, policy makers
and regulators can work together to support cancer biobanking and the
research it underpins.
- Provide practical information, coordination and development
to individuals and organizations involved in cancer biobanking to
ensure that they are not unnecessarily hindered in their work.
- Provide an accurate and regularly updated picture of the
cancer biobanking provision in the UK that will inform funders
supporting research on donated human biosamples.
- Distribute the human biosamples that onCore UK has in its
custody.
- Harmonize approaches in regional and national biobanks
addressing critical issues in managing a modern human specimen
biobank. This is the specific mission of the Marble Arch Working
Groups (Marble Arch WG).
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| Promoting Harmonisation for
Epidemiological Biobanks (PHOEBE) |
- Establish a collaborative research network that will
identify and explore key issues that will help to ensure that Europe
makes best use of its rich array of population-based biobanks and
longitudinal cohort studies.
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| Public Population Project in Genomics
(P3G) |
- Promote collaboration between researchers in the field of
population genomics.
- Foster collaboration, optimize design, promote harmonization
of biobanks, and facilitate transfer of knowledge providing online
access to information and scientific tools.
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