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Tool 8: Summary of areas or activities for potential ERN and Industry collaboration

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

Stakeholders sometimes struggle to consider the range of activities on which ERNs and Industry could collaborate, besides the more traditional engagement around clinical trials, or more recently, partnering with multiple companies through the European Federation of Pharmaceutical Industries and Associations (EFPIA), in a large project via the Innovative Medicines Initiative, for instance. This resource builds upon material prepared for the comprehensive Together4RD Position Statement, to present a table listing a broad range of potential projects and activities which might be well-suited to ERN and Industry collaboration.

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Tool 7: Case Studies – examples of previous or ongoing public private collaborations in the Rare Disease space

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development Use Case

In addition to these initial 3 pilots, Together4RD has identified multiple case studies in the rare disease arena which may also serve as food for thought for other stakeholders wishing to follow suite and engage in projects

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Tool 6: Brief Summaries of the first Together4RD Pilots

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development Use Case

The first Together4RD pilots resulted from an open call launched in summer 2022, inviting all ERNs to submit an expression of interest outlining proposed industry collaboration, added value, readiness, involved centres, and any existing assets, data or infrastructure to build upon.

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ECRIN Clinical research metadata repository

Published by ECRIN

Clinical Research metadata repository ECRIN

The Clinical Research Metadata Repository is the online tool to help scientific researchers find documents and data linked to a clinical research study, and to obtain information on the accessibility of those results. ECRIN made the Clinical Research Metadata Repository freely available for all scientific researchers, and is updated regularly through collection of data from the most important sources of information worldwide, from New Zealand to The Netherlands and from Japan to Lebanon.

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Drug development and diagnostics

Published by Academy of Finland

Drug Discovery Service

Drug development and diagnostics is a common research profiling area of the University of Turku and Åbo Akademi University funded by the Academy of Finland. This website is a part of this joInternationalinitiative bringing together all information that is related to drug discovery and development or diagnostics from both universities.

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Toxicology in the 21st Century (Tox21)

Published by NCATS

Database Tool Toxicology Test

The Tox21 initiative is designed to improve toxicity testing methods and enable faster, more efficient evaluation of chemicals’ effects on human health.

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the Biomedical Data Translator

Published by NCATS

Database NCATS

NCATS launched the Biomedical Data Translator (Translator) program to accelerate biomedical translation for the research community. Through this program, NCATS will integrate multiple types of existing data sources and reveal potential relationships across the spectrum of data types.

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NCATS and NHGRI Genetic and Rare Diseases Information Center

Published by IRDiRC

Database or Tool GARD Genetic Disease Information Center NCATS NHGRI Research and Drug Development

GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases their families, health care providers, researchers, and the public in English or Spanish.

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Orphanet database

Published by IRDiRC

Database Database or Tool Orphanet Orphan Drug Rare Disease Research and Drug Development

Orphanet is a unique public resource worldwide, gathering and improving knowledge on all rare diseases (RD), affecting less than 1 in 2’000 people in the European population.

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Data mining

Published by IRDiRC

Data Mining Database or Tool Research and Drug Development

data mining methods enable the discovery of new or the repurposing of previously known pharmaceutical compounds in the development of treatments for new indications.

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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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Tool 8: Summary of areas or activities for potential ERN and Industry collaboration

Tool 7: Case Studies – examples of previous or ongoing public private collaborations in the Rare Disease space

Tool 6: Brief Summaries of the first Together4RD Pilots

ECRIN Clinical research metadata repository

Drug development and diagnostics

Toxicology in the 21st Century (Tox21)

the Biomedical Data Translator

NCATS and NHGRI Genetic and Rare Diseases Information Center

Orphanet database

Data mining