Latest projects

3rd Health Programme (2014-2020)
ERKNet Registry for Rare Kidney Diseases [ERK-REG]
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the coll...
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the collection of information relevant to patient health and clinical research within the framework of the European Rare Kidney Disease Reference Network (ERKNet).
This will be accomplished by the construction and implementation of a single core registry encompassing all rare kidney diseases in pediatric and adult patients.
The ERKNet Registry will collect at annual intervals (1) a common data set providing basic information about clinical, histopathological and genetic diagnosis, patient status, current kidney function and treatment modality and available biospecimens, and (2) a selected disease-specific set of key performance and outcome indicators. The latter will be defined by the ERKNet workgroups in a structured consensus-building process involving evidence-based guideline review and an iterative Delphi surveys among internal and external experts.
The Registry will contain an automated statistics and benchmarking functionality to allow continuous monitoring and benchmarking of treatment quality, guideline adherence and patient outcomes.
Existing disease- and treatment specific registries used by a major fraction of ERKNet members will be linked to the ERKNet Core Registry to allow data transmission and avoid the need of double entries. A stringent data protection policy will be applied in full compliance with the EU directive and regulation as well as national regulations on patient privacy and data protection, including central peudonymisation with separate storage of medical and patient identifying information.
In summary, we are proposing an innovative Web-based registry solution with a patient-oriented focus on continuous healthcare quality inmprovement by automated performance monitoring and Network wide benchmarking.
Start date: 01/01/2018 - End date: 31/12/2020

Call: Rare diseases - support for New Registries
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes...
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes the creation of reference networks (in compliance with point 4.1), Union wide information databases and registries for rare diseases based on common criteria.
3rd Health Programme (2014-2020)
Framework Partnership Agreement 2018-2021 [FPA 2018-2021]
EURORDIS Framework Partnership Agreement 2018-2021
Start date: 22/12/2017 - End date: 21/12/2021
Call: Operating grants 2018-2021
Topic: 3rd Health Programme (2014-2020)
3rd Health Programme (2014-2020)
European Cancer Leagues Collaborating for Impact in Cancer Control [ECL FPA 2018-2021]
The Association of European Cancer Leagues (ECL) provides a unique platform in Europe as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues...
The Association of European Cancer Leagues (ECL) provides a unique platform in Europe as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. Active since 1980, ECL currently has 26 members from 23 countries in the European Region, covering 19 EU member states.
The objectives of this proposal are to:
- inform policy to ensure cancer control remains high on the political agenda;
- promote the European Code Against Cancer (ECAC) as the essential tool for cancer prevention in Europe;
- support leagues in the implementation of the Council Recommendation on Cancer Screening;
- unite leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
- advocate for the European Guide for quality improvement in comprehensive cancer control to be mainstreamed in national cancer control plans.
These objectives will be achieved through ECL's role as the secretariat of the MEPs against Cancer group; continuing our extensive work in tobacco control, including organising the triannual European Conference on Tobacco or Health (ECToH); developing training workshops and study exchanges for leagues; networking leagues in the ECL Patient Support Working Group, and Task Force on Access to Medicines; facilitating multi-stakeholder policy dialogues at national and European levels; and supporting targeted dissemination of ECAC to young people, including making use of the EU Solidarity Corps.
The activities of this proposal are particularity relevant to the work programme of the Third EU Health Programme as they directly address the core priorities of cancer, health promotion and prevention of chronic diseases, access to healthcare, and patient empowerment. These actions deliver high EU added-value by disseminating key outcomes from the EU level at the national level, and enabling the efficient input from cancer leagues to the EU policy dialogue.
Start date: 21/12/2017 - End date: 20/12/2021

Call: Operating grants 2018-2021
Topic: 3rd Health Programme (2014-2020)
3rd Health Programme (2014-2020)
Joint Action on Tobacco Control [JATC]
Smoking and other forms of tobacco consumption are considered the single most important cause of preventable morbidity and premature mortality worldwide. Efforts to reduce the devastation of tobacco-r...
Smoking and other forms of tobacco consumption are considered the single most important cause of preventable morbidity and premature mortality worldwide. Efforts to reduce the devastation of tobacco-related deaths and illness in the EU consist of the Tobacco Products Directive (TPD), and the WHO Framework Convention on Tobacco Control (FCTC). The TPD lays down rules governing the manufacture, presentation and sale of tobacco and related products. The TPD stipulates that Member States shall require manufacturers and importers of tobacco products to submit to their competent authorities information, via a common entry gate (EU-CEG) – an IT tool designed to ensure uniform application of the reporting and notification obligations, harmonise the submission of data, facilitate comparison and reduce administrative burden.

The general objective of the Joint Action on Tobacco Control will be to provide support for the implementation of the TPD throughout the 28 EU MS through the mining of EU-CEG data, supporting of laboratory collaborations and effort to evaluate priority additives. The specific aims of the project are:

• To ensure appropriate coordination and evaluation
• To support the dissemination of information to the public, regulators and researchers.
• To enhance the ease of access to the data collected through the EU CEG
• To monitor and provide support to the tasks of tobacco and e-cigarette product regulation
• Assist EU MS networking and collaborations between laboratories for tobacco evaluation.
• Support EU MS in the process of monitoring and updating priority additives
• To integrate the JATC results into national policies

With the above in mind, this proposal comes at a perfect timing to aid the regulatory activities that would be needed across the EU MS with regards to the implementation of the TPD across 28 EU MS spanning a population of 508 Million people.
Start date: 16/10/2017 - End date: 15/10/2020

Call: Joint Actions 2016
Topic: 1. Promote health, prevent diseases and foster supportive environments for healthy lifestyles taking into account the "health in all policies" principle
3rd Health Programme (2014-2020)
Joint Action on integrating prevention, testing and linkage to care strategies acros HIV, viral hepatitis, TB and STIs in Europe (INTEGRATE) [INTEGRATE]
The “Joint Action on integrating prevention, testing and link to care strategies across HIV, Viral Hepatitis, TB & STIs in Europe” (INTEGRATE) has the overall objective to increase Integrated earl...
The “Joint Action on integrating prevention, testing and link to care strategies across HIV, Viral Hepatitis, TB & STIs in Europe” (INTEGRATE) has the overall objective to increase Integrated early diagnosis and linkage to prevention and care of HIV, viral hepatitis, TB and STIs in EU Member States by 2020.
A number of tools have been developed to reduce transmission, optimize early diagnosis and linkage to care for one or more of these four diseases. INTEGRATE will map relevant existing tools for cross-linking. A peer-review process will identify which of these tools are complimentary or redundant for other disease(s), and which could be adapted or require further innovation.
HIV, viral hepatitis, TB and STIs are cross-borders public health threats of concern to Europe that affect vulnerable populations disproportionately and require personalised interventions. As multiple dimensional approaches are required to reduce the public health burden, the most optimal profile of approaches that provide additive effects (and that are reasonably cost-effective) should be identified and implemented broadly.
INTEGRATE provides a platform to disseminate and exchange best practice among Member States and facilitate discussions on innovations and emerging issues within the four diseases. In this respect, INTEGRATE is a shared European effort that extends beyond the partners and can create important synergies across European stakeholders, projects and initiatives.
INTEGRATE supports the implementation of the Commission Communication on ‘Combating HIV/AIDS in the European Union and neighboring countries’ and the ‘Action Plan on HIV/AIDS in the EU and neighboring countries’ by ensuring better preparedness across the EU and by identifying innovative evidence-based testing and prevention tools to reduce new cases of HIV, viral hepatitis, TB and STIs in priority groups.
Start date: 01/09/2017 - End date: 31/08/2020

Call: Joint Actions 2016
Topic: 1. Promote health, prevent diseases and foster supportive environments for healthy lifestyles taking into account the "health in all policies" principle