Project ERN-RND – European Reference Network for Rare Neurological Diseases

Basic data

Acronym:
ERN-RND
Title:
European Reference Network for Rare Neurological Diseases
Duration:
01/03/2017 to 28/02/2022
Abstract / short description:
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
Keywords:
Rare Neurological Diseases
Patient-centred network
coordination and knowledge transfer
infrastructure for diagnosis
evidence-based management
research and collection of patient data

Involved staff

Managers

Faculty of Medicine
University of Tübingen

Local organizational units

Institute of Medical Genetics and Applied Genomics
Department of Diagnostic Laboratory Medicine
Hospitals and clinical institutes, Faculty of Medicine

Funders

Brüssel, Belgium
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