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 1 will be:
• Kick ERN-RND off through a highly engaging kick-off meeting involving all stakeholders,
• Establish operability of all governance bodies as well as operational bodies such as working groups and disease expert groups,
• Establish and disseminate access points for all ERN-RND HCPs and pilot E-Health virtual consultation platform as ERN-RND access point for external clinicians and patients
• Consent and disseminate diagnostic flowcharts for all RND covered by ERN-RND
• Identify most important care needs for RND and design high impact strategies to address these needs
• Build ERN-RND web-site as THE RND information hub


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



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 seven most important operational targets for year 3-5 are:
• Role-out of CPMS in ERN-RND for disease group specific use cases
• Define responding strategies for disease groups specific most important care needs for RND in the EU
• Implement EQA scheme for genetic diagnosis of RND
• Together with the European Academy of Neurology put in place process for development of RND clinical practise guidelines
• Implement ERN-RND training program consisting of training workshops, fellowships and e-learning
• Demonstrate value of RND registries for trial-readiness
• Establish ERN-RND web-site as THE European RND disease knowledge hub



The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single data base encompassing all rare neurological diseases in pediatric and adult patients (the ERN-RND Registry), which will collect information according to the "Set of common data elements for Rare Diseases Registration". The members of ERN-RND provide healthcare to more than 35,000 patients with rare neurological diseases. The proposed ERN-RND Registry will target patients, who suffer from the following rare neurological diseases and conditions: Ataxia and HSP, Leukodystrophies, Frontotemporal Dementia, Dystonia, Paroxysmal Disorders & NBIA, Atypical Parkinsonism and Huntington’s Disease & Choreas. The ERN-RND registry project will pursue three main objectives: 1. The ERN-RND core Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research. 2. The second main objective of the project will be to link the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries. 3. The third objective is the implementation of a continuous monitoring system to follow center performance in terms of care quality and patient outcomes.
