International Summer School on Rare Disease Registries and FAIRification of data

26^th-30^th September 2022.
The training course will be held in an ONLINE FORMAT, given the uncertainties linked to the evolution of the Covid-19 pandemic and to the international situation.
Respondents who are not selected and contacted by email by the 17^th of June should consider themselves on a reserve list until the 9^th of September 2022.
After this date the selection process will close, and we hope that the non-selected respondents will apply for the next edition of the training course.

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). EJP RD is a European Commission funded project (Grant Agreement No 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”. For more information about the EJP RD, see https://www.ejprarediseases.org/

This Course is a part of the WP14 on “Data Management & Quality Training”, which aims to organise residential training courses in different Countries. WP and Task Leader: Dr. Claudio Carta, ISS.

Course Director: Dr. Claudio Carta, ISS.

The Course is made up of 5 days of training organised by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP RD task partners LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (ELIXIR-NL), CNR (ELIXIR -IT), AMC, ELIXIR/EMBL-EBI (UNIMAN)

The Course is endorsed by the International Conference On Rare Diseases and Orphan Drugs (ICORD).

ISS has gained vast experience by organising numerous courses focused on rare disease registries with the support of key partners. Since 2013 ISS has organised and hosted the “International Summer School on Rare Disease and Orphan Drug Registries” and since 2014 the “Bring Your Own Data To Link Rare Disease Registries”.

This course is composed of two training modules:

– During the first three days module (26^th -28^th September 2022), participants will learn (a) what resources are needed for the establishment/maintenance of a high-quality registry (b) the features of successful strategies to ensure (i) long-time sustainability of the registry, (ii) quality, (iii) legal and ethical issues in compliance with the EU (European Union) General Data Protection Regulation.

– During the second two days module “FAIRification of data”, (29-30 September 2022) participants will deepen their knowledge on the single steps of the FAIRification of data and will discover the potential of FAIR registries. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning.

In the first and second module there will be interactive plenary presentations and question & answer sessions between speakers and participants. Moreover, in the second module there will be hands-on exercises and a wrap up session.  

The training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.
To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted to each training module. A selection process will be applied based on the participants’ background, role with reference to registry activities, and involvement in ERNs.

Registration is now open HERE until the 29^th of May 2022.

 Registration is possible for:
– the first training module: “Rare Disease Registries”, 26^th -28^th September 2022
– the second training module: “FAIRification of Data”, 29^th -30^th September 2022
– the entire course: “Rare Disease Registries” and “FAIRification of data”, 26^th -30^th September 2022.

The course and registration are free of charge.
The course organisers will not cover expenses incurred by the participants in any case.

At the end of each training module a learning assessment, based on an online multiple-choice questionnaire will take place and a satisfaction survey will be submitted to the participants.

At the end of the course a certificate of attendance will be handed to the participants who attended 100% of the single training module or the entire course program. No credits of Continuing Education in Medicine will be issued. 

English

ONLINE on the Microsoft Teams Platform of the EJP RD

If you have questions, please write Dr. Claudio Carta: claudio.carta@iss.it (in Cc laura.cellai@iss.it)

See the programme here.