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International Summer School on Rare Disease Registries and FAIRification of Data

Istituto Superiore di Sanità – Aula Rossi
Via Giano della Bella, 34
Rome, Italy
23/09/2019 - 27/09/2019

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 International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). The Course is made up of 5 days of residential training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), HSK (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC].

This course will be held on 23-27 September 2019 at Istituto Superiore di Sanità (Aula Rossi, Via Giano della Bella, 34 – Rome, Italy) and it is composed of two training modules:

  • The first module “Rare Disease Registries” (23-25 September), where participants will learn  what resources are needed for the establishment/maintenance of a high quality registry and the features of successful strategies to ensure long-time sustainability of the registry, quality, legal and ethical issues in compliance with the EU General Data Protection Regulation and FAIR principles;
  • The second module “FAIRification of data”, (26-27 September), where participants will make use case data FAIR. The potential of a FAIR registry, as the basis for cross resource questions, will be demonstrated by executing a query across the use cases that become FAIR. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning.

The Summer School if characterized by a mixed learning method, where plenary presentations and problem-based learning methodology will be alternated with hands-on experience (Bring Your Own Data, BYOD) and breakout sessions. Attendees will work in breakout groups with IT trainers.

The course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives.

Online registration form is available [here] until 20 June 2019.

Download the agenda of the Summer School [here].

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