[ELIXIR-ITA_ml] [ELIXIR-IIB] Summer School on Rare Disease and Orphan Drug Registries including BYOD - Sep 10-14 2018 - Rome, Italy

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Ven 1 Giu 2018 15:45:33 CEST


Please circulate this email to those who might be interested.

The National Centre for Rare Diseases, Istituto Superiore di SanitÓ (Rome,
Italy), in collaboration with ELIXIR-IIB,

ELIXIR-NL, RD-Connect, EURORDIS, Orphanet, EuRRECa, European Reference
Networks, EPIRARE and ICORD,

is pleased to announce the "6th International Summer School on Rare Disease
and Orphan Drug Registries", including Bring Your Own Data Registries.


Registries are key resources in order to increase timely and accurate
diagnosis, improve patients management, tailor treatments, facilitate
clinical trials, support healthcare planning and speed up research.

The course will provide participants with useful tools and methodologies
for establish a registry, the quality of the data collected and how a
registry is turned into a FAIR resource.

It intends:

i) to promote the establishment of Findable, Accessible, Interoperable,
Reusable (FAIR) registries in compliance with IRDiRC and EU

ii) to support cooperation among different registry stakeholders and
coordination with registries that are developed within European Reference
Networks and National Plans in the EU.

The course is organized in two training modules with the following

   - the first one (“Rare Disease Registries”, September 10-12, 2018) will
   provide participants with useful tools and methodologies to plan,
   establish and manage the registry activities.
   - the second one (“Bring Your Own Data - BYOD”, September 13-14, 2018)
   will be a hands-on experience (Bring Your Own Data), where the attendees
   work with FAIR data experts to make their data FAIR and linked to other
   data that has been made FAIR before.

The "6th International Summer School on Rare Disease and Orphan Drug
Registries" is open to health professionals, researchers, medical
specialists, registry curators, database managers and representatives of
patients’ associations involved in or intend to establish a rare disease
registry, including ERN registries.

Registration is possible for:
- the first training module (Rare Disease Registries, Sept. 10-12, 2018)

- the second training module (Bring Your Own Data- BYOD, Sept. 13-14, 2018)

 - or both (Rare Disease Registries and BYOD, Sept. 10-14, 2018).


Registration is free of charge.

Please, note that travel, subsistence and other costs incurred by the
participants to attend the event are not covered by the organisers.


Aula Rossi, Istituto Superiore di SanitÓ, Via Giano della Bella, 34 - Rome,


*Deadline for applications: 16 June 2018* Course date: 10-14 September 2018

Full details at: http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3

Should you have any question, do not hesitate to contact the Organisers at
rareregistries-school a iss.it

We apologise for cross-posting.

Please, email us back with the word REMOVE as the subject line, if you
don't want to receive messages from ELIXIR-IIB Training anymore.

Kind regards,

the Organisers.

*ELIXIR-IIB Training *
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