Research And Collection Of Patient Data / Projects

3rd Health Programme (2014-2020)
European Reference Network for Rare Neurological Diseases [ERN-RND]
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as establi...
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the six most important operational targets for year 2 are:
• Introduction of CPMS in ERN-RND for e-consultation of clinical cases
• Consensus on disease group specific care quality indicators
• Consensus on diagnostic flowcharts for all RND covered by ERN-RND
• Identify disease groups specific most important care needs for RND in the EU
• Establish ERN-RND web-site as THE RND information hub and use it as the core of a ERN-RND information strategy
• Define minimum quality and interoperability criteria for RND registries

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

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Research And Collection Of Patient Data
3rd Health Programme (2014-2020)
European Reference Network for Rare Neurological Diseases [ERN-RND]
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as establi...
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. ERN-RND’s strategic objectives for the first five year period are: 1. To increase by at least 20% the overall percentage of RND patients with a final diagnosis; 2. To improve care of RND patients, reaching at least a 20% improvement in established outcome measures; 3. To develop, share and implement care pathways and guidelines for all RND groups represented in ERN-RND; 4. To create, develop and enhance constituents’ capacity to design, implement and supervise RND training, education and capacity building measures so that health care providers (HCP) of all EU member states actively participate in ERN-RND in the future; 5. To develop a comprehensive and data based European RND cohort to better understand these conditions and thus improve their management and help developing and testing treatments.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: Research And Collection Of Patient Data