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

Published by

C4C Clinical Research Network European Reference Network Network Orphan Drug paediatric Rare Disease Research 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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Tool 2: Examples of Initiatives which Foster Public-Private Partnerships in Rare Disease and Complementary Areas

Published by

European Reference Network European Union Industry collaboration Network Rare Disease Research and Drug Development

This resource presents examples of programmes and structures which facilitate public private partnerships in rare disease or a complimentary area.

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ACT-EU is the stakeholder fora and groups within the European medicines regulatory network (EMRN)

Published by ACT EU

Clinical Trial CTAG Network Regulatory

A list of stakeholder fora and groups within the European medicines regulatory network that are involved in the clinical trial lifecycle. Detailed information is published on each group or forum, along with a visual representation of their interactions.

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ACT EU Interactive map

Published by ACT EU

Clinical Trial clinical trial innitiatives Network non-commercial sponsors

An interactive map of support initiatives in each Member State for non-commercial sponsors conducting clinical trials. The initiatives were compiled with input from the Clinical Trials Coordination Group (CTCG). This mapping may not be fully comprehensive and will be updated as new initiatives are identified.

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FlyBase

Published by Fly Base

Fruit Fly Model Genomic Database Network Repository

A Database of Drosophila Genes & Genomes

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Zebrafish Information Network

Published by Zfin

Genomic Database Network Repository Zebrafish Model

The Zebrafish Information Network (ZFIN) is the database of genetic and genomic data for the zebrafish (Danio rerio) as a model organism. ZFIN provides a wide array of expertly curated, organized and cross-referenced zebrafish research data.

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Rare Diseases Clinical Research Network (RDCRN)

Published by NCATS

Clinical Development NCATS Network RDCRN

The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

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Advisory Committee for Therapeutics (ACT) Toolkit

Published by Newcastle University

Clinical Trial Expert Advice Network Neuromuscular Research 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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Connect 4 Children (C4C) – Paediatric Clinical Research Networks

Published by IRDiRC

C4C Clinical Research Network Network Orphan Drug Research and Drug Development

c4c (connect4children) is a large collaborative European network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population.

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European Reference Networks

Published by IRDiRC

Clinical Collaboration European Reference Network Network Rare Disease Research and Drug Development Research 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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The Innovation Management Toolbox was originally developed through funding from the EJP RD project, which received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825575. The continued development and maintenance of the Toolbox are now supported by the ERDERA partnership, funded under the European Union’s Horizon Europe Research & Innovation programme, grant agreement No. 101156595.

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