New initiative to support rare disease research in the Netherlands

The Netherlands Federation of University Medical Centres and Elsevier, a global leader in research publishing and information analytics, today launched a new Rare Disease Monitor service to support rare disease research across the Netherlands. The freely available dashboardopens in new tab/window provides information about the research strengths of all Dutch medical research institutions carrying out research into known rare diseases.

There are more than 8,000 different known rare diseases. They occur in fewer than 1 in 2,000 people but can also be a tumor, which occur in approximately 6 in 100,000 people per year. Rare diseases are serious, and often life-threatening.

The Rare Disease Monitor will provide insights into the relative strengths of Dutch research programs on rare diseases, helping research institutions to identify and focus on opportunities. Health professionals, patient organizations and research funders will also benefit by having the same information, allowing them to monitor progress in their own fields of interest.

The dashboard is a collaboration between the Netherlands Federation of University Medical Centres (NFU) and Elsevier and is part of the Open Science agreement between Dutch universities, funders and Elsevier.  It is freely available at: https://epdos.nl/rarediseasemonitoropens in new tab/window

The analytics are based on ORPHAcodes - provided by INSERM in France. For these codes SciBite in Cambridge has ascertained to which research articles in Scopus they apply. A team of NFU representatives and Elsevier data scientists tested the quality of the data and decided on the specs of the dashboard.

“An estimated six to eight percent of the Dutch population has a rare disease, so we all likely know someone who suffers from one. The rare disease monitor will show which diseases are being studied, in which institutions. We hope it will help the Dutch research community further their knowledge into rare diseases and support them in their vitally important work,” said Max Dumoulin, Vice President of Portfolio Innovation, Elsevier.

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