1 Organised by Istituto Superiore di Sanità Rome (Italy), September 21-22, 2017 Introduction of the BYOD, dataset and group division Claudio Carta National Centre for Rare Diseases Istituto Superiore di Sanità Rome, Italy Bring Your Own Data To Link Rare Disease Registries
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1Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
Introduction of the BYOD, dataset and group division
Claudio CartaNational Centre for Rare Diseases Istituto Superiore di Sanità Rome, Italy
Bring Your Own Data To Link Rare Disease Registries
Bring Your Own Data To Link Rare Disease Registries
2Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
1st Edition 20142nd Edition 2015
3rd Edition 2016 Welcome !
Bring Your Own Data, BYOD : To Link Rare Disease Registries
4th Edition
3Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
total: 221
BYOD: 139
total: 78
BYOD: 58
total: 71BYOD: 46
total: 61
BYOD: 34
4th BYOD 2017
total: 148BYOD: 97
total: 64
BYOD: 44
3rd BYOD 2016
2nd BYOD 2015
Bring Your Own Data To Link Rare Disease Registries
Total n° of subscriptions
Bring Your Own Data
4Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
The "Bring Your Own Data, BYOD, To Link RareDisease Registries" aims to promote theestablishment of Findable, Accessible, Interoperable,Reusable (FAIR) Rare Disease (RD) registries
BYOD is a hands-on experience, where the attendeeswork with FAIR data experts to make their sampledata FAIR and linked to other data that has beenmade FAIR before.
General Roadmap:
General Roadmap: You Are Here
5Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
(i) Attendees Subscripition(ii) Technical organization(iii) Attendees selction(iv) Analysis of the items of the datasets provided by participants(v) Technical video conference among trainers(vi) Tentative output data(vii) Data hosting software(viii) Shared documents among trainers and attendees(ix) Video conference Trainers and Attendees
08:30 Participants registration for BYOD09:00 Welcome address (D. Taruscio)09:15 Round of introduction09:30 Introduction of the BYOD, dataset and group division (C. Carta)09:45 Introduction to conceptual modeling and next steps (M. Roos)10:00 Break-out: Participants analyse the dataset, create a driving user question and draw a concept
model on paper (IT-Trainers)11:00 Coffee Break11:30 Plenary session: Participants present concept models (M. Roos and IT-Trainers)12:20 Document ontologies and clinical ontologies (R. Cornet)12:40 ORDO and HPO ontologies (M. Hanauer)13:00 Lunch14:00 Break-out: Participants do ontological modelling (IT-Trainers)14:45 Plenary session: Participants present ontological models (M. Roos and IT-Trainers)15:05 Introduction to the FAIRifier tool and metadata editor (M. Roos, R. Kaliyaperumal)15:30 Break-out: Participants follow the FAIRifier tutorial (IT-Trainers)17:00 Wrap up First Impressions / progress report17:30 End of the day
BYOD: Updated Programe
15Organised by Istituto Superiore di Sanità
Rome (Italy), September 21-22, 2017
Day 2 Friday Sept 22, 2017
9:00 Break-out: Hands on continued (IT-Trainers)10:00 Plenary session: Demonstration and Recap of the use of FAIRified data and FDP by LD experts
(R. Kaliyaperumal)10:45 Coffee 11:00 Break-out: FAIRification sketch and new questions (possibly apply) on own data (IT-Trainers)11:45 Plenary session: present FAIRification sketch, implications for FAIR project planning (M. Roos)13:00 Lunch 14:00 FAIR project planning continued and future challenges and examples 16:00 Remarks and Conclusion (M. Roos, D. Taruscio)16:30 End of the BYOD
Acknowledgments:
Bring Your Own Data To Link Rare Disease Registries , ISS-CNMR, Rome (Italy), September 21-22, 2017
Bring Your Own Data To Link Rare Disease Registries
Marco Roos, Annika Jacobsen, Rajaram Kaliyaperumal, David van Enckevort, Marc Hanauer, Andra Waagmeester, Mark Wilkinson, Ronald Cornet, Mark Thompson, Nuno Miguel da Silva Nunes, Domenica Taruscio, Mascha Jansen, Peter-Bram ‘t Hoen, Luiz Bonino, Rachel Thompson, Allegra Via, Luana Licata, Erik Schultes ,Barend Mons, rare disease patients and representatives, BYOD’s attendees