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World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

Veenendaal, March 24, 2023 | Press Release: World Duchenne Organization (WDO) are pleased to announce that their recent 3-day online FAIR Training course will be embedded in the FAIR training portfolio Health-RI is currently developing. This collaboration signifies a major step forward to building capacity for FAIRification through training. 

The online course was developed to address the urgent need for training among stakeholders in the rare disease community. Presenters were experts from FAIR Data Systems (Spain), Universitätsklinikum in Freiburg (Germany), and the Radboud University, Leiden University and Amsterdam University Medical Centers (The Netherlands). Open to everyone interested in this important topic, 200 registrants from 25 countries participated in the course from March 7-9, 2023. Among them were representatives from different academic and research institutions, pharmaceutical companies, patient organizations, patients, and Health-RI representatives.

The FAIR training in question was delivered in three parts. The first day was a journey back in-time to understand the thinking behind the FAIR Principles that led to their inception. Participants were shown how to apply them in a clinical context and how they matter to patients with rare diseases in finding “others in the same boat as them”. The second day delved deeper into the technicalities of a FAIRification process. Attendees learned all about Findability, Accessibility, Interoperability, Reusability and how to assess the level of FAIRness of a resource. In the third and final day everything thought on the previous days came to life with a live demonstration of real interoperability between five registries. It was the perfect ending to an ‘impeccable’ and ‘insightful’ training course as described by enthusiastic participants.

Discussions are currently ongoing  with Health-RI to find the optimum platform to incorporate existing training materials (i.e.presentations and recordings) so that they can be offered immediately to other Data Stewards and researchers to support their knowledge capabilities.

Please contact Nawel Lalout, FAIR project manager at World Duchenne Organization if you wish to find out more at [email protected].

About the World Duchenne Organization

The World Duchenne Organization is committed to collaborating with FAIR experts to achieve their common goal to make patients’ data more valuable by increasing the ability of computers to find, interpret, integrate, and analyze those data autonomously to advance research, answer questions that matter to patients and ultimately find innovative treatments.

For more information visit https://www.worldduchenne.org/

About Health-RI 

Health-RI is a Dutch non-profit foundation that aims to “facilitate and stimulate an integrated health data infrastructure accessible to researchers, citizens, care providers and industry”. They have several projects and initiatives that support connecting, sharing and reuse of health data in the Netherlands, including fostering the implementation of the FAIR principles.

For more information visit https://www.health-ri.nl/ or contact [email protected]