Event name: ORGANISING & MAXIMIZING RARE DISEASE BIOLOGICAL SAMPLE DATA IN BIOBANKS WORKSHOPS
Dates & venues:
Workshop 1 1-2 April 2019, Milan, Italy
Workshop 2 29-30 October 2019, Vilnius, Lithuania
Information about the workshops:
INTRODUCTION & OBJECTIVES
This training workshop is a part of a series of capacity building programs put forth by the European Joint Programme on Rare Diseases (EJP RD). EJPRD is a European Commission co-funded project (GA N° 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”.
The organisation of this workshop series on biobanks and biological samples is coordinated by Fondazione Telethon, Italy. Project partners in this training series are BBMRI-ERIC, Charité – Universitatsmedizin Berlin, Institute of Health Carlos III Spain, Hacettepe University Turkey, Medical University Gdansk Poland, University Medical Centre Groningen the Netherlands and Vilnius University Hospital Lithuania.
The goal of this training series is to develop the capacity on data management of biobanks, allowing them to optimise operations to support the need of RD research community. Through the workshops, we aim to promote FAIR of resources and
research reproducibility. The training workshops will offer biobanks to learn how to harmonise and share their rare disease biological sample data and encourage direct interactions between RD clinicians/researchers and biobanks, where researchers can exchange on how to leverage biobanks in their RD research.
PARTICIPANTS AND REGISTRATION
The training workshop is open to healthcare professionals, researchers, clinicians, biobank managers, database managers and rare disease patient advocates. In particular, we welcome participants from all types of biobanks (academic, hospital, private) with focuses on rare diseases.
To ensure active participation and exchange with teaching staff and fellow participants, a maximum of 25 participants will be admitted to the training workshop. Up to 4 places are reserved for patient advocates or representatives.
The registration for the Vilnius workshop, 29-30 October 2019, will open soon. Please save-the-date and look out for registration!
Info will be provided once the registration is open.
FEES AND COSTS
The workshop and registration is free of charge. Coffee, refreshments and lunches will be offered during the workshop. Participants must arrange their own travel, accommodation and other expenses to attend the workshop. The workshop organisers will not cover expenses incurred by the participants.
At the end of the workshop a certificate of attendance will be handed to the participants who attended the entire workshop. No credits of Continuing Education in Medicine will be issued.
Workshops will run in English.
If you have questions, please write to the workshop organiser Dr Mary Wang : mwang(at)telethon.it
More information about the workshops can be found on the EJP RD website.