Datos del proyecto:
- Organismo financiador: Comisión Europea
- Programa: 3rd EU Health Programme 2014-2020
- Nº proyecto: 724161
- Nº de socios / regiones participantes: El consorcio está integrado por 34 socios de 22 países europeos entre los que se cuentan: Malta, Alemania, Polonia, Chipre y España. El país del socio coordinador es Italia.
- Fecha de inicio y fin: 01/10/2016 - 30/09/2019
- Duración: 36 meses
- Financiación total EU recibida para el proyecto: 2.499.871,97 €
- Área: Cáncer
- Web del proyecto: http://jointactionrarecancers.eu/
Resumen del proyecto:
The goal of the JARC will be to contribute to improve health outcomes for patients with rare cancers in the EU and to decrease health inequalities across EU countries. Strategically, maximizing chances of ERNs on rare cancers to be successful is seen as a key factor.
Therefore, general objectives of JARC will be:
1. To prioritise rare cancers (RCs) in the agenda of the EU and Member States (with a view to national cancer plans and quality of healthcare, harmonization of clinical practices, innovation through promotion of clinical and translational research);
2. To develop innovative and shared solutions, mainly to be implemented through the future ERNs on RCs, in the areas of quality of care, research, education and state of the art definition on prevention, diagnosis and treatment of rare cancers.
Acciones desarrolladas por el grupo de investigación / innovación en la Región de Murcia:
- Definition and list of rare cancers.
- Cancer registration (leader)
- Epidemiological indicators.
- Model to evaluate the impact of the ERNs.
- High-resolution studies.
- Solutions on how to incorporate clinical practice guidelines within ERNs.
- To make recommendations on models of healthcare for survivors of childhood cancers.
- Review of National Cancer Plans and rare cancer plans across the EU Member States.
Reflexiones del grupo de investigación / innovación regional:
Any improvement in care and research on RCs is expected to impact on patient outcomes, i.e., overall survival and quality of life.
This being the goal, JARC is intended to serve as a reference source of policy recommendations on RCs in Europe, contributing to ameliorate diagnosis and treatment of RCs, to foster research on RCs, to support the establishment of ERNs and to empower patients.
Therefore, the outputs of the JARC will essentially be consensus-based recommendations on:
- Epidemiological surveillance of RCs
- Quality of healthcare, primarily through shaping of the new ERNs
- Clinical practice guidelines on RCs
- Innovation, especially in regard to clinical research regulations, as well as practices and semantics regarding patient data and tissues
- Medical and patients education
- Health policy measures on RCs at the EU and national level
- Patient empowerment.
