Part I - PHGEN

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CORE GROUP MEMBER: Daniel Torocsik University of Debrecen, Medical and Health Science Centre, Hungary. Domenico Coviello Fondazione IRCCS,Italy.
PROVISION PILLAR Evaluation tool Domenico Coviello Elia Casati

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…from Sevilla to Budapest...

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Starting from…

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Starting from…

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ASSESSMENT Monitor Health Diagnose & Investigate

POLICY DEVELOPMENT Inform, Educate, Empower Mobilize Community Partnerships Develop Policies

ASSURANCE Enforce Laws Evaluate

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GROUP LEADER: Róza Ádány University of Debrecen, Medical and Health Science Centre, Hungary CORE GROUP MEMBER: Daniel Torocsik University of Debrecen, Medical and Health Science Centre, Hungary Domenico Coviello Fondazione IRCCS,Italy Elia Casati Fondazione IRCCS, Italy GROUP MEMBER: João Lavinha, Instituto Nacional de Saude Dr Ricardo Jorge, Portugal Iñaki Gutiérrez Ibarluzea, Osteba, Basque Office for HTA. Dept. of Health, Spain Alastair Kent, Genetic Alliance UK, United Kingdom Bodo Lange, Max Planck Institute for Molecular Genetics, Germany Henk van Kranen, RIVM, Netherlands Wolfgang Hoeppner BioGlobe GmBH, Germany Stoyanka Popova Medical University of Varna, Faculty of PH, Bulgaria Ilona Koupil Centre for Health Equity Studies (CHESS), Sweden Pål Møller, Norwegian Group on Inherited Cancer, Norway

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Ilona Koupil Henk van Kranen

Amal Khanolkar

Elia Casati Domenico Coviello

Alastair Kent

Stoyanka Popova

Róza Ádány Dániel Tör csik João Lavinha Elena Syurina

Iñaki Gutiérrez Pal Moller Ibarluzea

Klara Dokova Wolfgang Hoeppner

Bodo Lange

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1) Integrated approach among the 3 pillars

2) Not only qualitative assessment but also quantitative evaluation

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To obtain homogeneus analysis data from the three pillar Possibility to evaluate gaps and overlaps among the topics of the three pillar

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Introduction The need to achieve a qualitative and quantitative assessment of our guidelines has required the creation of a new evaluation tool; this methodological step forward will allow us to align our methodology with the other Pillars in order to obtain comparable results from the analysis of the Guidelines. For these reasons we will use as a base the assessment tool developed by Use Pillar and we will customize it so that assessment will be performed from the provision’s point of view in public health genomics. The final result will consist of an Evaluation tool and a manual; the Evaluation tool will provide a systematic framework for the assessment of both quality and content components of guideline while the purpose of the manual is to provide practical assistance when appraising guidelines.

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Starting point:assesment tool Use pillar

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Methodology Starting from the topics of the Wheel of Fortune we will develop the items of the Evaluation tool. For each item information will be provided to help to understand the issues and concepts addressed. Suggestions for rating the items are presented. Each item should be rated by using a four point Likert scale, which are defined specifically under each item. The four point Likert scale has the following categories: 4: Strongly Agree 3- 2: Agree/Disagree 1: Strongly Disagree Besides the ratings comment boxes support the assessment with the possibility for explanatory comments connected to the rating.

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Budapest meeting: 1.Presentation of first draft of evaluation tool 2.Comments, evaluation end agree on the tool 3.Timetable to: •finalize the tool •task allocation of guideline to be assessed Next months: 1.EVALUATION

TOOL ON LINE (MID OF MAY) 2.GUIDELINES EVALUATION (END OF JUNE) 3.GAPS IDENTIFICATION (END OF JULY) 4.WRITE THE GUIDELINE