Endo-ERN covers an exceptionally large number of rare conditions across the age span. Whilst some conditions are covered in established international disease registries, there are several that are not. Collectively, the existing detailed disease registries display a number of qualities associated with good registry practice but the involvement of patients, participation by members of Endo-ERN and the research output of these registries is variable with a minimal capacity for interoperability. The central cause that has led to this variation is the lack of a core endocrine registry and the lack of core standards for registries. The overall objective of the European Registries for Rare Endocrine Conditions (EuRRECa) is to ensure that Endo-ERN acheives its mission of driving up standards of clinical care and patient-centred research through maximizing participation in disease registries. The project will do this by developing a new core endocrine registry that collects a core dataset that also includes objective markers of clinical outcome, runs an e-surveillance programme and signposts participants to high-quality, detailed, disease-specific and patient-centred registries that have been evaluated by EuRRECa. The project will achieve the above objective by building on the structure that has been created by Endo-ERN. EuRRECa will receive guidance from expert advisory groups that align with the thematic groups of Endo-ERN. Their guidance will flow through work packages that will review the needs of patients, parents and ethics, evaluate the quality and interoperability of datasets and combine them wth patient centred clinical outcomes. Clear policies that are acceptable to patients, researchers and industry for accessing data for research coupled with widespread dissemination and knowledge-exchange through closely affiliated professional endocrine societies, patient support groups and across all the ERNs will ensure that EuRRECa is sustained over the longer term.
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The expression of medical desert is commonly used in the public and mediatic field referring to several situations or areas where people have difficulties to access care (e.g. waiting time, doctor’s registration difficulties or long distances to hospital).The identification of such areas became a major issue and is exacerbated by the fact that the accessibility itself is complex to address due to its multidimensional nature (spatial, physical, temporal, financial, and cultural).The OASES proposal aims to represent a source of knowledge in European medical deserts, reinforcing the capacity of health authorities of EU Member States to reform their health systems and address all the important aspects to successfully tackle the challenges that the medical desert is posing, with specific regard to actions focusing on skill mix, task shifting, use of e-health and IT systems, recruitment and retention management and policies, in order to guarantee universal coverage also in rural and underserved areas. To achieve this, the proposal presents and supports the application of a stepwise methodology focused on a) definition of a measurement methodology and tool applicable in different contexts (minimal, intermediate, advanced dataset); b) implementation of the measurement methods and tools in selected pilot sites of 7 European countries; c) assessment, policy actions analysis and sustainability in each pilot site, d) impact evaluation in each pilot site and updating the measurement methods and tools according to the pilot results; e) scaling up of the methods and of the policy actions at EU level.
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The main objective of this project is to set up the good practices applied to tissues and cells (T&C) preparation processes and patient follow-up procedures, to ensure their safe and effective implementation.
The outputs of this project will provide tools for assessing and verifying the quality, promote safety and assure efficacy of therapies with human tissues, Hematopoietic Stem Cells (HSC) and Assisted Reproductive Technologies (ART), addressing mainly to the implementation of novel T&C preparation processes and clinical indications, but also to the need of retrospective studies where weaknesses or insufficient safety data currently exist.
Recommendations will be forwarded to Tissue Establishments (TE) and Organizations Responsible for Human Application (ORHA), as the main actors in the process of validation and designing T&C preparation processes and patient follow-up according to a clinical indication.
This project aim to define the threshold of novelty, including definition of the factors that should be considered to determine the scope and depth of the clinical follow-up studies needed. The scope and extent of the recommended studies will be determined on the basis of a risk based approach performed taking into account factors such as the novelty of the product/preparation process/clinical indication, and its technical complexity.
A T&C Database of products, preparation procedures, clinical applications and their current status of authorisation and implementation will be established, working as a starting point for determining the ‘novelty’ of processes/therapies by TEs and ORHAs, and allowing the use of established processes/therapies by any centre that strictly follows the same procedure/clinical procedure/indication.
This project also aims to define a “GTP’s management model” that could provide impetus for future standards harmonisation and promotion, and allow the establishment of European accreditation and training programs for TE.
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Health workforce planning systems show a high variety of maturity in the EU. Member States tend to focus on diverse aspects of managing health workforces and health policy focuses on optimising the operation of health systems by various measures. Initiatives on task shifting can contribute to more effective organisation of care and human resources for health management at different levels, so committing to improve efficient and sustainable health systems in innovative ways.The main objectives of the TaSHI project are to provide a novel understanding and up-to-date knowledge on task shifting and on transferability and uptake of good practices in implementation. TaSHI applies different methods of analyses in order to provide added value on the concept, notion, and implementation of task shifting at EU-, national- and regional levels. TaSHI performs pilots at five implementation sites to gather evidence and data on the different types of task shifting (e.g. working time re-allocation, re-considered scope of practices in primary care, mental health care, radiology and ophthalmology, benefiting from telemedicine and digital health).TaSHI aims to facilitate dialogues and knowledge exchanges between the relevant stakeholders. Strengthening governance and stakeholder engagement for transferring and upscaling task shifting practices plays a crucial role in policy-making supporting health reforms for workforce development, as well as in enhancing cultural sensitivity, flexibility, readiness, and organizational adaptation to task shifting.TaSHI delivers a collection of good practices, useful tools and methods, a guidebook on task shifting supporting the real-life implementation, case studies on the pilots’ experiences, practical training materials and curriculum, and a set of recommendations. The deliverables on tangible solutions and practical products support EU MS at policy and organisational level to initiate and implement their own actions tailored to the local settings.

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The overall ambition from EU Member States (MS) is to better include eHealth into health policy and better align eHealth investments to health needs. A central aspect is the transferability of health data across borders of MS and therefore the organizational, technical, semantic and legal interoperability. In order to ensure progress and to bridge the gaps between the governance, strategy and operational levels, a dedicated mechanism for eHealth at EU level has been established: The eHealth Network was formally established in 2011 through the Commission’s Implementing Decision 2011/890/EU based on Art. 14.3 Directive 2011/24/EU and represents the highest decision-making body at EU political level. At a European level there is a strong need to maintain this mechanism and to ensure further common political leadership and ongoing integration of eHealth into health policy in order to continue developing eHealth services responding to health systems‘ needs and health objectives. This is the framework for the Joint Action to support the eHealth Network which is led by the MS and co-financed by the European Commission through a Joint Action.

Hence, the main objective of the Joint Action is to act as the main preparatory body for the eHealth Network. By doing so, the Joint Action aims to develop political recommendations and instruments for cooperation in the four specific priority areas that are specified in the eHealth Network's multi-annual work plan 2015-2018 and that were adopted by the eHealth Network in May 2014:
(1) Interoperability and standardisation,
(2) monitoring and assessment of implementation,
(3) exchange of knowledge and
(4) global cooperation and positioning.

Thereby, the Joint Action functions also as a platform for operational and strategic cooperation between MS on eHealth including their relationship with eHealth Stakeholder Groups and Standardization Organizations.
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BRIDGE Health (BRidging Information and Data Generation for Evidence-based Health Policy and Research) aims to create European health information (EU-HI) and data generation networks covering major EU health policy areas. The network uses comprehensive experience and assures a knowledge transfer from past health and research frameworks.

The aim is to work towards a comprehensive, integrated and sustainable EU-HI supporting evidence-based health policy and research for the EU and Member States by providing blueprints and/or concepts of building blocks for a future EU-HI research infrastructure consortium (ERIC-HI).

The project bridges key EU projects in domains of population and health system monitoring and indicator development, health examination surveys, environment and health, population injury and disease registries, clinical and administrative health data collection systems and methods of health system monitoring and evaluation.

The project aims to:
1) enhance the transferability of health information and data for policy and improve the utility and use of data and indicators for stakeholders in policy making, public health surveillance and health care;
2) reduce health information inequality within the EU and within MS;
3) develop a blueprint for a sustainable and integrated EU Health information system by developing common methods for a) standardising the collection and exchange of health information within and between domains, between MS, including e-health platforms; b) ensuring data quality, including procedures for internal and external validation of health indicators; c) undertaking priority setting exercises for health information, d) addressing ethical and legal issues associated with the collection and use of health data within MS and the EU.

Coordination, dialogue and interaction with DG-SANCO, the Expert Group on Health Information, Eurostat, DG Research and other DGs ensure the sustainability of the work and bridges to a future ERIC-HI.
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Rare diseases (RD) have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate response to their specific problems: poor recognition leading to diagnostic delay and inappropriate management including adapted social services, poor health outcomes, social burden, limited knowledge on natural history and pathophysiology leading to an insufficient development of new therapies. The low prevalence and the specificity of RD make that a global, multi-stakeholder approach, intended to gather specific expertise and to build shared strategies is necessary to address these issues.
The general objectives of RD-Action are to:
▪ Support the further development and sustainability of the Orphanet database, the biggest global repository of information on RD
▪ Contribute to solutions to ensure an appropriate codification of RD in health information systems
▪ Continue implementation of the priorities identified in Council Recommendation 2009/C151/02 and the Commission Communication (COM 2008 679) on RD, with a view to ensuring the sustainability of the recommended priority actions and to support the work of the Commission Expert Group on Rare Diseases (CEGRD).
This JA will expand and consolidate the achievements of the former JAs on RD supported by the European Commission: the Orphanet JA and the EUCERD JA. More precisely, this proposal has the ambition to help member states to implement the recommended measures adopted or to be adopted by the CEGRD and to produce the data necessary for countries to do so. Interactions between the production of data at the Orphanet database level and the implementation of policy priorities including codification will be strengthened during this JA.RD-Action large geographical coverage is key to success as it will promote the transfer of European recommendations into national policies and the collection of information and concerns from MS to the CEGRD, thus to the European Commission.

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The general objective for EUnetHTA JA3 is to increase the use, quality and efficiency of joint HTA work at European level to support evidence-based, sustainable and equitable choices in healthcare and health technologies and ensure re-use in regional and national HTA reports and activities, in order notably to avoid duplication of assessments. An overarching objective is to develop a general strategy, principles and proposal for a scientific and technical mechanism of permanent sustainable European Collaboration on HTA in the light of the Directive on CBHC. During the JA3 the collaborative production of structured HTA core information, including rapid HTAs will be structurally implemented and the methodologies and production related information and communication technology infrastructure will be finalised as to stand alone from 2020 onwards. EUnetHTA JA3 will also aim to increase the alignment between HTA reports used for reimbursement decisions and clinical practice guidelines that are used by physicians in daily practice. Additionally, EUnetHTA JA3 will also support more alignment of different processes in the lifecycle of health technologies. For instance, processes on market authorization and HTA of pharmaceuticals could be organised in a more closely aligned fashion which may lead to a timelier and more efficient process promoting earlier patient access to products that have a real added value. EUnetHTA JA3 will also contribute to the discussion on the assessment of the effectiveness and safety of new medical devices as is currently taken place as part of the debate on new European legislation for medical devices. Finally, all these outcomes will contribute to the dissemination of health information and knowledge, thus improving policy-and decision-making in the health systems, which turns into protection of citizens against unsafe or ineffective technologies and improves access to high value health technologies. Ultimately this contributes to imTo be developed
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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.
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Europe is paying a heavy price for chronic diseases (CD): it has been estimated that CD cost EU economies 115 billion € or 0.8% of GDP annually; and this figure does not include the additional loss in terms of lower employment rates and productivity of people living with chronic health problems. However, the aspiration is a health-promoting Europe, free of preventable CD, premature death and avoidable disability could be possible. Initiatives on CD should build on four cornerstones: health promotion and primary prevention as a way to reduce the burden of CD; patient empowerment; tackling functional decline and quality of life as the main consequences of CD, and making health systems sustainable and responsive to the aging of our populations associated with the epidemiological transition (an increase in incidence of CD and extended life expectancy) whose consequence is an increasing prevalence of CD. In this Joint Action, CHRODIS-PLUS, our goal is to support Member States through cross-national initiatives identified in JA-CHRODIS to reduce the burden of CD, while assuring health systems sustainability and responsiveness. CHRODIS-PLUS aims to promote the implementation of policies and practices with demonstrated success in each of the four cornerstones mentioned, in closely monitored implementation experiences that can be validated before scaling them up. For this, a total of 42 beneficiaries representing 20 European countries will collaborate to implement pilots and generate practical lessons that could contribute to the uptake and use of CHRODIS-PLUS results. Practices to be implemented will be based on the collection of policies, strategies and interventions that started in JA-CHRODIS and in its outputs such as the Integrated Multimorbidity Care Model or the Recommendations for Diabetes Quality criteria or national plans. During the 36-month life CHRODIS-PLUS will disseminate its activities and monitor and evaluate them to verify the progress and impact of the action. CHRODIS-PLUS will look for synergies with international/regional/local policy initiatives in CD. CHRODIS-PLUS will count on the Governing Board of representatives from European Ministries of Health, key to CHRODIS-PLUS development and sustainability, an Executive Board and a General Assembly where all associated partners will gather. A proposal for the EU added value of cross-country collaboration in the field of CD and the sustainability of the results from JA-CHRODIS and CHRODIS-PLUS beyond 2020, when this project ends, will be approved.
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