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.

엘스비어 소개

엘스비어는 첨단 정보와 의사결정 지원 분야의 글로벌 선도 기업으로 100년 넘게 과학과 헬스케어의 발전을 지원하며 인류 진보에 기여해 왔습니다. 우리는 170개국 이상에서 학술 및 기업 연구 커뮤니티, 의사, 간호사, 미래의 의료 전문가와 교육자들을 지원합니다. 근거에 기반한 신뢰할 수 있는 과학·의학 콘텐츠와 최첨단 AI 기술을 결합해 중요한 통찰과 혁신적인 솔루션을 제공해, 의미있는 성과를 이루도록 돕고 있습니다. 또한 다양성과 지속 가능성을 제품과 기업 문화 전반에 내재화하며, 우리가 속한 커뮤니티와 협력합니다. 엘스비어 재단opens in new tab/window은 전 세계에서 연구와 보건 파트너십을 지원합니다.

엘스비어는 전문가 및 기업 고객에게 정보 기반의 분석과 의사결정 도구를 제공하는 글로벌 기업 RELXopens in new tab/window의 일원입니다. 자세한 내용은 www.elsevier.com에서 확인할 수 있으며, 소셜미디어 @elsevierconnect를 통해 최신 소식을 받아보실 수 있습니다.