The development of an open research intelligence tool for rare disease research in the Netherlands

This poster describes the process of the development of a research intelligence tool to analyse rare disease research in the Netherlands through a partnership by NFU (Dutch Federation of University Medical Centers) and Elsevier. To the best of our knowledge, this is the first tool that can surface and organise scientific output on rare diseases using established annotation and natural language processing mechanisms. We focus on the track leading up to the development, including strategic motivation and user needs, the development of a proof-of-concept tool, upscaling the idea to a national collaboration project, the development of the final tool and a usability evaluation and subsequent fine-tuning. Special attention is devoted to open science aspects of this process and reflections on the partnership between academic institutions and a publishing company.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2024-10-21
DOI
https://doi.org/10.5281/zenodo.13960048
Primary Topic
Pharmacological Receptor Mechanisms and Effects
Type
article
Field-Weighted Citation Impact
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article

The development of an open research intelligence tool for rare disease research in the Netherlands

Zenodo (CERN European Organization for Nuclear Research)
Pharmacological Receptor Mechanisms and Effects
article

The development of an open research intelligence tool for rare disease research in the Netherlands

article en

Abstract

This poster describes the process of the development of a research intelligence tool to analyse rare disease research in the Netherlands through a partnership by NFU (Dutch Federation of University Medical Centers) and Elsevier. To the best of our knowledge, this is the first tool that can surface and organise scientific output on rare diseases using established annotation and natural language processing mechanisms. We focus on the track leading up to the development, including strategic motivation and user needs, the development of a proof-of-concept tool, upscaling the idea to a national collaboration project, the development of the final tool and a usability evaluation and subsequent fine-tuning. Special attention is devoted to open science aspects of this process and reflections on the partnership between academic institutions and a publishing company.

Zenodo (CERN European Organization for Nuclear Research)
Erasmus MC (NL)
Partnerships for the goals
Openalex Percentile: Top 62%
Pharmacological Receptor Mechanisms and Effects
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