=Paper=
{{Paper
|id=Vol-2042/paper27
|storemode=property
|title=The FAIRification of Data and the Potential of FAIR Resources Demonstrated, in Practice, at the Rome Bring Your Own Data Workshop
|pdfUrl=https://ceur-ws.org/Vol-2042/paper27.pdf
|volume=Vol-2042
|authors=Claudio Carta,Marco Roos,Annika Jacobsen,Rajaram Kaliyaperumal,Mark Thompson,Mark Wilkinson,Ronald Cornet,Andra Waagmeester,David van Enckevort,Mascha Jansen,Luana Licata,Allegra Via,Domenica Taruscio
|dblpUrl=https://dblp.org/rec/conf/swat4ls/CartaRJKTWCWEJL17
}}
==The FAIRification of Data and the Potential of FAIR Resources Demonstrated, in Practice, at the Rome Bring Your Own Data Workshop==
https://ceur-ws.org/Vol-2042/paper27.pdf
The FAIRification of data and the potential of
FAIR resources demonstrated in practice at the
Rome Bring Your Own Data workshop
Claudio Carta1 , Marco Roos2 , Annika Jacobsen2 , Rajaram Kaliyaperumal2 ,
Mark Thompson2 , Mark D. Wilkinson3 , Ronald Cornet4 , Andra
Waagmeester5 , David van Enckevort6 , Mascha Jansen7 , Luana Licata8 , Allegra
Via9 , and Domenica Taruscio1
1
Istituto Superiore di Sanitá, Italy
{claudio.carta,domenica.taruscio}@iss.it
2
Leiden University Medical Centre, The Netherlands
m.roos@lumc.nl,annika.jacobsen.86@gmail.com,rajireturn@gmail.com,
mark9630@gmail.com
3
Centro de Biotecnologia y Genomica de Plantas UPM-INIA, Spain
mark.wilkinson@upm.es
4
Academic Medical Center - University of Amsterdam, The Netherlands
r.cornet@amc.uva.nl
5
Micelio,Belgium
andra@micelio.be
6
University Medical Centre Groningen, The Netherlands
david.van.enckevort@umcg.nl
7
Dutch Techcentre for Life Sciences, The Netherlands
mascha.jansen@dtls.nl
8
University of Rome Tor Vergata, Italy
luana.licata@gmail.com
9
National Research Council, Italy
allegra.via@cnr.it
Abstract. It is widely agreed that rare disease patient registries should
be international and follow the guiding principles of Findable, Accessi-
ble, Interoperable, Reusable (FAIR) for humans and computers. Further-
more, the procedures to collect and exchange data should be harmonised.
Since 2014, the Bring Your Own Data (BYOD) annual workshop has
been organised by and held at the National Centre for Rare Diseases
- Istituto Superiore di Sanitá (CNMR-ISS), Rome, Italy with the aim
to promote the establishment of FAIR rare disease registries in compli-
ance with IRDiRC and EU recommendations. The event has been ar-
ranged with the support of RD-Connect and ELIXIR, in particular, the
Dutch Techcentre for Life Sciences representative of ELIXIR-NL. The
general roadmap of the BYOD workshop contains at least a preparatory
phase, an execution phase, and a follow-up phase to foster the results
of the workshop by surveying and having phone conferences with par-
ticipants. At the 4th edition of the BYOD this year, held in September,
there were twenty eight participants selected on the basis of their back-
ground, registry role, and involvement in European Reference Networks
2 the potential of FAIR resources demonstrated at the Rome BYOD workshop
(ERNs). This edition took place in collaboration with or with the sup-
port of several additional organisations. This year the focus was on (i)
the FAIRification process, with partially pre-prepared semantic models,
(ii) FAIR data tools, and (iii) FAIR data management. A new element
was a semantic model sketching exercise with the registry managers. At
the beginning of the workshop, an overview of the FAIRification pro-
cess and an introduction to four selected, scrambled, and anonymous
sample datasets were provided. In the following sessions, the BYOD be-
came highly interactive and the participants, split into four groups, went
through the process of FAIRification step by step with break-out sessions
alternated to plenary sessions in which participants presented the results
of their group work. In the first step, each group discussed and drew a
conceptual model of their assigned dataset, followed by a plenary session
to discuss commonalities and complementarities. In the second step, the
groups created an ontological model based on the conceptual model from
the previous step which required ontology search. In the third step, the
OpenRefine-FAIRifier tool and the metadata editor were used to aid in
the creation of the machine readable format of the selected data. Then,
to show the potential of data linkage, a cross resource question was ex-
ecuted over the four FAIRified sample datasets. The final part of the
workshop was focused on a discussion about FAIR data management.
Based on our experience from the previous editions of the workshop, the
new elements were: (i) in the preparatory phase only four heterogeneous
datasets among those received were selected, ii) a breakout and plenary
session at the end of each FAIRification step was introduced, (iii) a time
slot was allocated for the self sketching the semantic model with pen and
paper by the registry managers, (iv) a time slot was allocated to discuss
FAIR data management and FAIR project planning. We concluded that
the main objectives of the BYOD for registry managers were achieved.
The participants were able to see the potential of a FAIR registry and
this allowed them to get quicker responses to cross-resource questions
improving the use of available information on rare diseases and accel-
erates research. In addition, participants had the chance to get further
into the FAIRification process and understand the importance of data
management planning when setting up a registry. As a final note, it is im-
portant to stress that the friendly environment and the high interactivity
among the different players, i.e., data managers, researchers, clinicians,
patient representatives, and IT-trainers, strongly contributed in making
the BYOD workshop a success.
Keywords: Rare Disease Registries, FAIR data principles, BYOD
Acknowledgments. We greatly thank speakers, trainers, FAIR data experts,
organisers, participants, patient associations and their representatives for their
contribution to the BYOD workshop. This edition took place in collaboration
with or with the support of CNMR-ISS, RD-Connect, ELIXIR (in particular
Dutch Techcentre for Life Sciences representative of ELIXIR-NL and ELIXIR-
IIB), RD-Action, EURORDIS, ERNs, EpiRare, and ICORD.