The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

Last November, The World Duchenne Organization organized the 3rd International Meeting on FAIR data visiting for Duchenne and Becker Muscular Dystrophy. This time they joined forces with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimizing the use of patients’ data.

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Combined with the expertise of clinicians from ERN EURO-NMD, the event consortium provided the broader Rare Diseases network and stakeholders a better understanding of what is being implemented at the European level in regards to data ‘visiting’ across borders. The word ‘visiting’ replaced ‘sharing’ as with FAIR technologies data stay at source.

The FAIR event was held online and saw the participation of 100 participants from 24 countries. The FAIR event consortium would like to renew their appreciations to the speakers who intervened with valuable insights and meaningful discussions.

Q: ‘How can FAIR make a difference to you as a patient?” A:“I want to find others in the same boat as me.” Lizanne Schreur, woman living with Duchenne

Presentations

Get inspired by their FAIR journey

1. “Finding others in the same boat as me”
   Personal message from Lizanne Schreur, Digital Television Director, Author and woman living with Duchenne, The Netherlands
2. How global open FAIR data are changing the world in practice
   Erik Schultes, FAIR Implementation Lead, GO FAIR Foundation, The Netherlands
3. FAIR Data Visisting is now possible for the Duchenne Data Platform
   Nawel Lalout, FAIR Project Manager, Duchenne Parent Project, The Netherlands &
   Mark Wilkinson, BBVA-UPM Industry Chair on Biotechnology, Co-Founder of FAIR Data Systems, Spain

“My passion is finding ways to help computers bring the right data, to the right person, at the moment they need it. FAIR is getting me very close to this goal!” Mark D. Wilkinson, Isaac Peral Distinguished Researcher

A FAIR journey can only be taken by others

1. From the perspective of EURORDIS
   Jelena Malinina, Digital Health Expert, Data Director, EURORDIS, France
2. From the perspective of RaDiOrg, Belgium
   Montse Urbina, Scientist at FAPA Hereditary Colorectal Cancer Project
3. From the perspective of SMA Europe, Germany
   Nicole Gusset, President at SMA Europe
4. From the perspective of the Rare Diseases GO FAIR Patient Network
   Michela Onali, Co-chair RDs GO FAIR Patient Network, Cross Cultural Mediator and Rare Disease Advocate, Italy
5. Duchenne FAIR use-case in an EU funded project: BIND
   Elvina Sakellariou, Project Manager at Duchenne Data Foundation, Greece

Building a solid ecosystem for data visiting

1. European Health Data Space and how to join the dots to tackle Rare Diseases
   Jerome De Barros, EC Policy Officer, Digital Health, The Netherlands
2. EMA Real World Evidence Strategy and Contribution to Rare Diseases
   Daniel Leaver Morales, Pharmacovigilance Risk Assessment Committee Member at European Medicines Agency, The Netherlands
3. EJP-RD: How will the VP integrate into the CRN of the Rare Disease Partnership?
   Ana Rath, European Joint Program on Rare Diseases (EJP-RD), Director INSERM, US14 – Orphanet, France
4. ERN’s perspective on Clinical Reported Outcomes and Patient Reported Outcomes: values and limitations
   Leo Schultze Kool, Former Head of the Interventional Radiology department at RadboudUMC, ERN VASCERN
5. Real example of Semantically Interoperable Care Pathway (video)
   Martin Ingvar, Professor and former Dean of Research at Karolinska Institutet, Sweden

“We have made it easy for new FAIR registries to participate in joint analyses with other registries, answering questions around disease diagnosis, aetiology and progression. Patients can be assured that their data are being reused, in a secure manner, by scientists, clinicians or other authenticated and authorised health professionals – which is their desire.” Peter-Bram ‘t Hoen, Professor of Bioinformatics at Radboud University Medical Center