PHGEN II fulfils priority action 220.127.116.11 of WP 2008 by producing the first edition of “European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies”. It builds on the experiences of PHGEN I (Public Health Genomics European Network) which was a networking exercise to develop a common understanding of Public Health Genomics between all stakeholders in Europe and which identified the need for European coherent guidelines in that field. Since genetic determinants are hardly recognized as playing a key role in the understanding of diseases and target-oriented prevention, ongoing exchange of knowledge and best practice in this rapid growing field is needed. The project uses an interdisciplinary approach and reviews the available evidence including evidence emerging from relevant European research and health action networks to avoid duplication of EU work and funding and to develop agreed on best practice guidelines. Key experts such as Public Health experts, EU lawyers, Human Geneticists, Ethicists, Systems Biologists, HTA experts and patient groups are involved into PHGEN II. By this, the often seen gap of knowledge transfer between basic science, health services delivery and public health is minimized. PHGEN II follows the methodology of the Public Health Trias to ensure a timely and evidence-based development of the guidelines which tackle both rare and common complex diseases. The process of guidelines development is in line with international standards and includes a public consultation process via internet, a pilot of the guidelines by the use of case studies and an Endorsement panel. The guidelines will acknowledge the diversity and cultural plurality in Europe, are part of the new Health Strategy of the EU and foster the approach of Health in all Policies. It encourages the implementation of the Lisbon Strategy and helps to preserve equity and solidarity in health care and public health in Europe.
PHGEN I ended in March 2009. PHGEN II continued at Maastricht University and was led by Prof. Dr. Angela Brand. PHGEN II has officially ended on 30 November 2012 with the reporting period ending on 30 January 2013.
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PHGEN II as a Success Story, Biobanks and Personalized Medicine
PHGEN II has been selected as one of the success stories funded by the EU heath programs. The detailed report can be found here. PHGEN II has also been mentioned in the report of the European Commission expert group on biobanks and can be found here. Further our project has been pubished in the European Science Foundation's 'Personalised Medicine for the European Citizen' and can be found here.
Meeting of European Alliance for Personalised Medicine
Commissioner Dalli (speech) and Cyprus Minister Mavroyiannis launched in Brussels on 18 September 2012 the manifesto by the newly-formed European Alliance for Personalised Medicine (EAPM), which brings together patient groups, academia, health professionals and industry, as well as the European Commission and the European Medicines Agency. This news has been covered by APM Health and the European Parliament Magazine. Click here for the picture of our PHGEN coordinator discussing with Commissioner Dalli.
During the final meeting in April 2012 in Rome, the PHGEN II European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies have been officially endorsed as the "Declaration of Rome 2012" by the European Member States as well as European key Institutions and Organizations such as EMA. The "Declaration of Rome 2012" has been published in the Journal "Drug Metabolism and Drug Interactions". It can be downloaded for free at the journal website here. Also a related editorial has also been published in the same journal which can be found at the journal website here. The "Declaration of Rome 2012" is the summary of the European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies produced in the form of 3 individual reports (QA, Provision & Use) by the PHGEN II consortium. These 3 parts can be accees below:
PHGEN II Extension Granted
Given the success of the project and realizing the deliverables go beyond the current deliverables, the PHGEN II project has been granted a 6 months cost netural extension by the EAHC. Therefore, the project will continue till the 30 November 2012. Originally the project was till 30 May 2012.
PHGEN II Final Meeting Rome
The PHGEN II final meeting (endorsement panel) took place in Rome, Italy. It was a success. Further information can be found here.
PHGEN II has released the definitions list which will be used as the guiding tools for the development of the guidelines. These constitute definitions developed during PHGEN I as well as new definitions. This can be found by clicking the link here.
The 3rd and final Steering Committee Meeting of PHGEN II took place on 23 February 2012 in Maastricht, The Netherlands. Further information can be found here.
ITFoM is one of six pilot projects in the European Future and Emerging Technologies Flagship scheme. These projects are vying for €1 billion funding from both the European Commission, Member States and other sources over ten years in order to generate a scientific revolution. Further information can be found from here.
Old information and news of PHGEN II can be found in the Archives here.
Public Health Genomics Journal
(Journal published in collaboration with GRaPH-Int)
'Public Health Genomics' is the first peer-reviewed international journal to focus on the translation of genome-based knowledge and technologies into public policy, disease prevention and the improvement of population health. It is a multidisciplinary bi-monthly forum containing conceptual and original research articles, editorials, reviews, short communications, country reports, case studies, viewpoints, news and various other features about the nature of public health genomics and related concepts.
For more details please visit http://www.karger.com/phg
PHGEN II is currently also developing a Wiki. This can be accessed here.
PHGEN II is coordinated by the Institute for Public Health Genomics (IPHG) at Maastricht University. The publication list contributed by partners of PHGEN II can be found here.
The IPHG coordinated the bachelor's program Public Health Genomics. The output of the successful course was a report made by the students with supervision from their supervisors. The report can be found here.
PHGEN II events have now officially ended.