Registries / Projects

3rd Health Programme (2014-2020)
European Registries For Rare Endocrine Conditions [EuRRECa]
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 no...
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.
Start date: 01/02/2018 - End date: 31/01/2021

Call: Rare diseases - support for New Registries
Topic: Registries
3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various stakeholders and making agreements among stakeholders in support of excellent care. The work plan is subdivided in 5 work packages containing the phased activities aimed at 8 main thematic groups.
Two key actions were required before Endo-ERN could start to generate an impact of the patients care. First, the network needed to be consolidated and we needed to map what expertise, tools, and gaps there are among the 71 members. Second, we need to create a single, easy-access platform containing all existing and future information. Surveys in the areas of educational requirements, diagnostics, and patient’s view on care have provided a solid reference on which specific strategies can be based. These network-building and mapping and the initiation of the platform activities constitute the first of 3 phases of our 5-year plan. Indeed, the end of Endo-ERN’s 1st year concludes phase 1.
In phase 2 (Y2-4) we focus on the stepwise execution and implementation of the planning generated in phase 1. While the platform has not reached its full functional state, it will be operational for most of the intended purposes, in short order. Using the Y1 developments, the coordination actions of Y2 will yield: (1) an educational program that fits with the needs of Endo-ERN members, (2) an e-environment that supports all actions of Endo-ERN, (3) Endo-ERN influence on setting guidelines and research agendas, (4) a functional clinical support Operational Helpdesk to democratise access to high-expertise consultations that also enables linking to registries (5) a start with an interconnected diagnostic laboratory network.


Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Registries
3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledg...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various (types of) stakeholders and making agreements in support of excellent care. The work plan is subdivided in 5 work packages containing phased activities aimed at 8 main thematic groups. After sculpting a coherent network in Y1, key initiation actions are currently being addressed. While the platform has not reached its full functional state yet it will be operational for most of the intended purposes within Y2. This functional network will have the requirements of troubleshooting and adaptations, which will be the focus of Y3, while Y4 will be centred around internal benchmark activities. Y4 will make any gaps in the network evident that may have been overseen before the transition from a theoretical to an operational network. The Y3-4 actions under the proposed SGA will result in the integration of 5 WPs and 8 MTGs to a point of functional operations. Key features include ability to perform virtual consultations, MTG-based e-learning, endocrine overarching research strategy/agenda in line with endocrine societies, effective matching of patients and expert labs for optimal care. The final period of the framework period is geared towards mechanisms to ensure quality (of activities, outcomes and added value, and members and their efforts) as well as sustainability. For this, Endo-ERN develops internal processes and also aims to collaborate with other stakeholders (ERNs, European Commission, national ministries of health, etc) to coordinate actions for quality assurance and sustainability. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. This final program will ensure this mission is implemented to make it a mainstay in the European healthcare ecosystem.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: Registries
3rd Health Programme (2014-2020)
Innovative Partnership for Action Against Cancer [iPAAC]
The general objective of the Joint Action – Innovative Partnership for Action Against Cancer (iPAAC JA) is to develop innovative approaches to advances in cancer control. The innovation that will be...
The general objective of the Joint Action – Innovative Partnership for Action Against Cancer (iPAAC JA) is to develop innovative approaches to advances in cancer control. The innovation that will be covered within the JA consists of further development of cancer prevention, comprehensive approaches to the use of genomics in cancer control, cancer information and registries, improvements and challenges in cancer care, mapping of innovative cancer treatments and governance of integrated cancer control, including a new analysis of National Cancer Control Plans. The development of innovative approaches to cancer control will be supplemented by a Roadmap on Implementation and Sustainability of Cancer Control Actions, which will support Member States in implementation of iPAAC and CANCON recommendations. The Roadmap will act as the central pillar of the JA, integrating the diverse topic areas, providing synergies between the topics, ensuring consideration of transversal issues for all topics and acting as the central comprehensive deliverable, integrating all the JA outputs. A variety of methods will be used to fulfil the general and specific objectives including pilot studies, working groups, expert panels, literature review and surveys. A governmental board will be in place to ensure that implementation and sustainability in national contexts are duly considered for each topic area. The proposal for the iPAAC JA proposes actions to address objective 1 of the 2017 annual work programme, that is promoting health, preventing diseases and fostering supportive environments for healthy lifestyles taking into account the ‘health in all policies’ principle. The work to be developed by the iPAAC JA is complementary to the outcomes of the EPAAC and CANCON Joint Actions, funded by the Second and Third Health Programmes and will build on their outputs, using the stakeholder networks as an optimal base for the development of innovative cancer control actions.
Start date: 01/04/2018 - End date: 31/03/2021

Call: Joint Actions 2017
Topic: Registries
3rd Health Programme (2014-2020)
European Registry for Rare Bone and Mineral Conditions [EuRR-Bone]
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) aims to realise improved, harmonised healthcare for people living with rare bone and mineral conditions (RBMCs) across Europe. Ou...
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) aims to realise improved, harmonised healthcare for people living with rare bone and mineral conditions (RBMCs) across Europe. Our focus includes over 150 severe rare bone diseases that affect cartilage, bones and dentin and more than 40 severe rare diseases affecting phosphate and calcium metabolism. In this project, we will establish the first pan-European registry in RBMCs.

RBMCs constitute a complex group of diseases with evident need for better and more harmonised care. The lack of natural history data is significant, and the quality of care and expertise varies across regions and in many countries is still unclear. Depending on first symptoms and local healthcare processes, a wide variety of healthcare specialists can be involved in the process. Until recently, there was limited cross-disciplinary alignment: each discipline had its own network, conference, guidelines and even registries. The European Reference Network on Bone Disorders (ERN BOND) has taken the lead to better organise the field, to harmonise and improve RBMCs healthcare.
Specifically, in this project, a core group of ERN BOND healthcare providers, affiliated centres and experts will:

• Establish a centralised registry for RBMCs within the scope of ERN BOND in collaboration with the already established European Registry for Rare Endocrine Conditions, EuRRECa, covering a core longitudinal minimal data set to capture their natural history from both clinician and patient perspectives.
• Establish four disease specific modules on Fibrous Dysplasia/McCune Albright syndrome (FD/MAS), Osteogenesis Imperfecta (OI), Rare Hypophosphatemia and Achondroplasia (ACHO), that capture genetic, clinical and patient related outcome measures in a scalable manner to other RBMCs.
• Provide a platform that enables detailed local, disease-specific registries on rare bone and mineral disorders to connect to EuRR-Bone.


Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Registries