What is JARDIN ?
The JARDIN joint action has been build in the frame of the EU4Health Programme (EU4H). JARDIN build on a consortium of 29 partner states : 27 EU Member states (MS) + Norway + Ukraine. It associates 55 stakeholders (all health ministeries, many HCP, research infrastructures…). Many ITHACA-linked HCPs are official participants. The grant agreement has been signed for three years, with a EU budget of 11 M€. JARDIN’s official start is February 1, 2024. A kick off meeting is foreseen in Brussels on March 6-8, 2024. For a detailed description, please consult the Description of Action.
Aims
Funded by the European Commission, the 24 ERNs are international networks of highly specialised HCPs across Europe who focus on specific medical domains. These domains deal with uncommon or low-prevalence complex diseases that require a high level of skill and resources. The ERNs offer remote expert consultations for patients residing in EU member states and Norway. They also facilitate knowledge development, professional training and education, as well as research activities. JARDIN aims to amplify the impact of ERNs, to improve access to timely diagnosis and appropriate treatment of RD patients and health professionals, and to support the long-term sustainability of the ERN system by contributing to the effective integration of ERN in the national health systems (while always respecting the autonomy of MS in this regard). This will be achieved through strengthening the use and re-use of health data, enhancing access to quality, patient-centred, outcome-based healthcare, and supporting integrated work among Member States. JARDIN objectives will involve enhancing the management of ERN-supporting HCPs at the national level, implementing effective models for quality assurance, optimising patient pathways and referral systems within ERN, facilitating the establishment of national reference networks and programmes for undiagnosed diseases or similar strategies that are connected to ERN, enhancing data management practices with the ultimate goal of achieving seamless interoperability among regional, national, and European health data sources, and identifying potential national support mechanisms for ERN-supporting HCP. In addition, JARDIN will formulate strategies to systematically distribute information about the ERNs, with a particular focus on patients and the medical community. The key objective is to guarantee the long-term viability of the proposed measures and implementations, which should be ultimately incorporated into revised national plans and strategies for rare diseases in each Member State.
Organisation
The workload is divided in several WPs: dissemination (WP2), sustainability (WP4), National governance and quality assurance models (WP5), National care pathways and ERN referral systems (WP6), National reference networks and undiagnosed disease programmes or equivalent strategies interlinked with ERN (WP7), Data management (WP8), and National support options (WP9), plus the classical coordination and evaluation WPs 1 & 3. Several ITHACA partners have a role in this organisation as task leaders or project leaders. Noteworthy, ITHACA is involved in task 8.4 “Testing and implementing integration solutions in agile mode”. The following objectives have been assigned to the WP:·
2.1. To achieve efficient and effective visibility, awareness, and acceptance of the JA to internal and external stakeholders·
2.2. To support national ERN-specific dissemination activities·
2.3. To develop a blueprint for national dissemination strategies on ERNs· 4.1. To develop the JA sustainability strategy including a) sustainability of JA actions at MS level and b) mechanism for sustainability/accountability at the EU level·
4.2. To support capacity building in MS for the elaboration of new/updated National Plans / Strategies for RD (in terms of sustainability of JA actions)·
5.1. To develop proposals for national governance models and practices for rare and complex disease HCPs and care pathways, fully interoperable with ERNs·
5.2. To develop a proposal for national quality assurance models for rare and complex diseases·
6.1. To develop recommendations for the organisation of national care pathways for rare and complex diseases interfacing with ERNs, including the recognition of and preferably full compliance with ERN-elaborated evidence-based resources (like Clinical Practice Guidelines)·
6.2. To develop a proposal for referral systems to ERNs·
6.3. To develop guidelines for the incorporation of CPMS advice into patients’ care·
7.1. To support capacity building in MS for the development of NRN or equivalent strategies for rare and complex diseases and their integration with ERN·
7.2. To develop structures and procedures for undiagnosed patients closely linked to ERN on a national and European level·
8.1. To develop recommendations ensuring the interoperability of data structures on MS level (local, regional, national) and ERN level·
9.1. To collect and analyse good practices and mechanisms to provide support to ERN-hosting healthcare providers at national level as well as to individual ERN centres at the hospital (HCP) level·
9.2. To develop specific recommendations for: 1. the national support to healthcare providers participating in ERNs, 2. the hospital support to individual ERN centres, 3. the CPMS service and reimbursement models