Transcript Next generation registries: going FAIR, going Gold
Next generation registries: going FAIR, going Gold
RD-Connect Working Meeting (By invitation only)
Rome, July 27-29, Istituto Superiore di Sanità,
Aula Rossi
Agenda
July 27- morning
9:30
Welcome coffee
10:00
Aims of the Meeting
Domenica Taruscio
10:15
My ideal toolkit to create interoperable registries: resources and gaps
Sabina Gainotti
10:30
The experience with OSSE MDR : navigating the universe of DEs
Holger Storf
10:50
The experience with ontologies in Patientcrossroads and RD-Connect
Vanessa Rangel Miler, Jud Rhode
11:10
RDRF : Derived data elements and other features
Tamas Szabo (TBC)
11:30
RADICO : common data elements and interoperability with the French RD registry
Jerome Weinbach
Breakout Session:
- platforms easing the creation of RD registries: orienting the choice (define criteria or create a table displaying basic info , differences and similarities that one would need - to know before choosing the right platform -OSSE, PC or RDRF) compare toolkit results and real world registries: Ring 14; SCID, Allan-Herndon Dudley Syndrome ()
Wrap up 12:30
Light lunch
July 27 - afternoon
Strategies for the search of ontologies
Estrella Lopez
Choosing the right ontology for your research purposes
Marco Roos
CDE browser
Yllka Kodra
HPO-Orpha mapping
Marc Hanauer
Breakout Session:
Christophe’s registry
Christophe Beroud (or one from his team)
Estrella/Manuel cases where the HPO was not sufficient
Estrella Lopez, Manuel Posada
Available CRF and mapping efforts: compare the results of manual mapping and those obtained by the software SORTA Managing new data elements
Wrap up:
July 28 morning
9:00
ID-Card new features
Heimo Muller, Robert Reihs
9:15
Comments on the ID-Card profiles
9:45
Adding COBRA guidelines for citing the database( where?
is it possible to autofill?)
Elena Bravo
10:00
Creating a CRF section in the ID-Card : “must have” or “nice to have”? how do you fill it in? ( SORTA for old CRF? drag and drop from RD-Connect CDEs and OSSE MDR? NIH inventory? HPO website? )
10:30 Coffee Break Breakout Session:
technical solutions for the CRF section. A focus on sustainability: - - - fees relation with “data hunting” companies relation with the governing boards ELSI issues
Wrap up 12:30
Light lunch
July 28 afternoon
Displaying more aggregate data: how? pre-defined matrix or according to registries preferences? Toolkit, registry creation and automatic filling of the ID-Card: feasibility, resources and gaps
Robert Reihs, Jud Rhodes (TBC)
July 29 morning 9:00
S ORTA: live demonstartion
David Van Enckehort
Applying MIABIS to the online catalogue
10:30 Coffee Break
New action items, solve overlaps
David Van Enckehort, Robert Reihs
General wrap up 12:30
End of the meeting
Anna Ambrosini
IT person (Telethon)
Participants
Sergi Beltran
(Centro Nacional de Analisis Genomico-GNAG)
Claudio Carta
(ISS-CNMR)
Sabina Gainotti
(ISS-CNMR)
Marc Hanauer
(Orphanet)
Yllka Kodra
(ISS-CNMR)
Monica Lanzoni
(JRC-Ispra)
Estrella Lopez
(Institudo del Salud CArlos III)
Heimo Mueller
(Medical UNiversity of Graz)
Vanessa Rangel Miller
(Patientcrossroads)
Robert Reihs
(Medical UNiversity of Graz)
Jud Rhode
(Patientcrossroads)
Marco Roos
(Leiden University Medical Centre)
Yaffa Rubinstein
(National Library of Medicine)
Holger Storf
(OSSE MDR)
Tamas Szabo
(RDRF)
Domenica Taruscio
(ISS-CNMR)
Rachel Thompson
(University of Newcastle)
Paola Torreri
(ISS-CNMR)
David Van Enckevort
(University of Groeningen)
Veronica
(EURORDIS)
Jerome Weinbach
(RADICO)
Remote connection
Christophe Beroud
(University of Marseille)
Virginie Bros-Facer
(EURORDIS)
David Salgado
(University of Marseille)
Technical Secretariat
Giuseppe Bernardo
(ISS-CNMR)
Patrizia Crialese
(ISS-CNMR)
Stefano Diemoz
(ISS-CNMR)
Andrea Vittozzi
(ISS-CNMR)
Contact
Venue
Istituto Superiore di Sanità, Via Giano della Bella 34 – Roma Room Rossi How to get:
A)
From FIUMICINO airport to Tiburtina railway station 1. On arrival at Fiumicino Airport, catch the train from Fiumicino Airport railway station to ORTE or to FARA SABINA (both trains stop at STAZIONE TIBURTINA, your destination). The trains are served each 15 minutes. The journey will take 40 minutes. 2. Stepping down, usually at nr 1 platform, exit from the main entrance. From Tiburtina railway station to ISS (see the map below) 1. Istituto Superiore di Sanità is in walking distance from Tiburtina railway station (800 meters), but you could also choose to catch the bus no. 542 (get down at second bus stop, you will find on the left Via Giano della Bella) at the Bus Station on the left or to take a taxi. 2. If you opt for walking: − cross the main street and walk down Via Guido Mazzoni just going straight ahead; − cross the road again and the name of the street will change in Via Arduino; − at the end of Via Arduino at the corner with Via della Lega Lombarda, cross again the road and just few meters after the Jolly Cinema on Via Giano della Bella 34, you will find the Istituto Superiore di Sanità.
B)
From CIAMPINO AIRPORT On arrival at Ciampino Airport you can choose to catch the bus "Terravision" from Ciampino airport to Termini railway station (it will take 45 minutes) or to take a taxi. From Termini railway station to ISS (see the map below) On arrival at Termini railway station, exit from the main entrance (Piazza dei Cinquecento), then catch the bus no. 310 or a take a taxi. MEETING PLACE TIBURTINA railway station TERMINI railway station MEETING. Accommodations here: http://www.epirare.eu/_meet/20110711/Accomodations.pdf