5th International Summer School on Rare Diseases and Orphan Drug Registries
18 - 22 Sep 2017
Istituto Superiore di Sanità, Rome, Italy
It is with great pleasure to announce that the 5th International Summer School on Rare Diseases and Orphan Drug Registries, will be taking place from September 18th 2017 up until September 22nd 2017. The summer school will be taking place at Istituto Superiore di Sanità, Rome, Italy.
Registries represent key resources 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 intend to:
1. Promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations
2. Support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.
The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.
From September 18th 2017 - September 20th 2017 the School will provide participants with useful tools and methodologies to establish, manage and plan the registry activities. The second part which will take place between September 21st 2017 - September 22nd 2017 will be a hands-on experience, where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before. Individuals can bring their own data.
The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations who are involved in or intend to establish a rare disease registry, mainly inside a European Reference Network.
For each ERN, we are especially looking to invite the following participants; a registry curator, a data manager and 1 ePAG (or a patient/patient representative linked with ePAG). The School will accept a maximum of 24-27 participants.
The program, registration information and selection criteria of participants will be available soon at the the following link: http://www.iss.it/cnmr
