Networks

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ERNs: a key EU infrastructure to partner for research activities, the why and the how

Published by

European Reference NetworkIndustry collaborationRare DiseaseResearch and Drug Development

The resource explains that European Reference Networks (ERNs) are a major EU healthcare and research infrastructure that bring together clinical expertise, data and specialised resources across Europe to tackle rare and complex diseases and are valuable partners for collaborative research activities. It emphasises the untapped potential of ERNs to engage with the pharmaceutical and biotech sectors, advocating for greater awareness and public–private partnerships to accelerate rare disease research and development and benefit patients

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What can the conect4children Stichting (c4c-S) do for ERNs

Published by

C4CClinical Research NetworkEuropean Reference NetworkNetworkOrphan DrugpaediatricRare DiseaseResearch and Drug Development

conect4children Stichting (c4c-S) is a non-profit, pan-European organisation that supports paediatric clinical research by providing expert advice and trial support services, including feasibility assessments and site identification, for ERNs and other stakeholders. Building on a successful public–private partnership, it mobilises a large network of experts and research-ready sites to improve the efficiency and quality of paediatric trials across Europe.

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Position statement on collaboration between ERNs and industry

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European Reference NetworkIndustry collaborationRare DiseaseResearch and Drug Development

Together4RD’s Position Statement highlights that although European Reference Networks (ERNs) have significant potential to accelerate rare disease research and innovation, collaboration with industry has been limited due to structural, regulatory and governance barriers that hinder robust partnerships. It calls for strategic action, frameworks and pilot models to enable transparent, well-supported ERN–industry collaborations that harness collective expertise and resources to better address unmet needs in rare disease research and improve Europe’s competitiveness in the field.

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Advisory Committee for Therapeutics (ACT) Toolkit

Published by Newcastle University

Clinical TrialExpert AdviceNetworkNeuromuscularResearch and Translational Resource

The TREAT-NMD Advisory Committee for Therapeutics (TACT) is a unique multi-disciplinary model centred upon an international group of academic and industry drug development experts, including patient representatives. TACT gives advice on the translational and development pathway of therapeutic programs in rare Neuromuscular Diseases. Due to its success in the neuromuscular field, a toolkit to replicate the TACT model has been produced. The Advisory Committee for Therapeutics (ACT) toolkit is intended to support rare disease communities outside of Neuromuscular to establish their own ACT, by providing them with step-by-step guidance and template documentation.

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European Reference Networks

Published by IRDiRC

Clinical CollaborationEuropean Reference NetworkNetworkRare DiseaseResearch and Drug DevelopmentResearch Collaboration

Participating in research provides patients with access to cutting-edge treatments and benefit the population and the health services as a whole by leading to the development of more effective, high quality, cost-efficient treatments and healthcare delivery models. ERNs represent an unicum in the clinical and research worldwide collaborative panorama, indeed 24 ERNs span the over 6000 rare diseases by involving 300 EU HCPs and over 1000 specialized units in 25 EU countries

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