General Info

JARC is divided into 10 Work-Packages. The first three are cross-cutting packages and the other seven are core packages

WP# Tittle Description Leader - Contact person
WP1 Coordination Actions to manage the project and to make sure that it is implemented as planned Paolo Casali, Annalisa Trama, Marco Acioli
WP2 Dissemination Actions to ensure that the results and deliverables of the project will be made available to the target group Maria Gazouli
WP3 Evaluation Actions to verify if the project is being implemented as planned and reaches its objectives Sakari Karjalainen, Henna Degerlund
WP4  Epidemiology Actions to propose an operational definition of RCs and recommendations to exploit population-based cancer registry data for research and for the development and assessment of future ERNs Gemma Gatta, Annalisa Trama 
WP5 Assuring Quality of Care Actions to design healthcare quality assurance systems or processes specific to the 12 major families of rare cancers to add to the ERN requirements Simon Oberst
WP6 Clinical practice guidelines Actions to assess the scenario of existing clinical practice guidelines on RCs and to provide recommendations on how to ensure best production, dissemination and implementation of clinical practice guidelines on RCs at local level and within future ERNs  Peter HOHENBERGER
WP7 Innovation and access to innovation Actions to provide recommendations on how to integrate translational and clinical research with routine RC care in the EU, especially within the evolving scenario of ERNs Marc Van Den Bulke
WP8 Medical education Actions to provide recommendations on how to connect and optimize educational resources for professionals and patients available throughout Europe with networked healthcare (with special regard to ERNs) and to provide recommendations to improve the European medical expert training instruments via the European Union of Medical Specialists Melegh BELA
WP9 Childhood Cancers  Actions to define collaborative measures for ensuring access of standard and innovative therapies and to address the research and clinical issues of young people with extremely RCs and of survivors of childhood cancers Gilles Vassal
WP10 Rare Cancer Policy  Actions to provide recommendations for harmonisation of RC planning within national policies/strategies and to address bottlenecks related to the orphan drug designation and marketing authorization process for medicinal products, as well as to optimize governace of ERNs Josep Maria Borras, Joan Prades

 

Six Specific Objectives of what JARC will do :

Objectives