EJP RD Training: Biobanking in rare diseases: the Poland experience

Through the last decade access to modern healthcare has improved significantly.  The lack of scientific knowledge about rare diseases (RDs) often results in a delay in diagnosis or availability of effective cures for the patients struggling from rare diseases. There is a need to connect international experts, researchers and clinicians to extend rare diseases knowledge and provide effective treatment that improve the prognosis or life comfort of patients.

Biobanks have an infrastructure that ensures sustainability and expansion of the quality management for the preservation, storage, distribution and analysis of human biological samples. The availability of novel information technologies offers the opportunity for data integration, and sharing the information about samples that is a potential for the rare disease area research. Collaboration between Biobanks, scientists and health care professionals can result in measurable benefits to the RD patient community improving knowledge about, for instance, the causes of the disease, the diagnosis and the development of new therapies.

The training is dedicated to scientists of biomedical sector who want to learn about biobanking standards in rare disease research. This course will focus in particular on the experience of the BBMRI.pl Consortium. This course will also cover the EJP RD Virtual Platform that provides advanced services to support the rare disease research to benefit patients and researchers. During this training, an overview of the RD research opportunities at the European level will be given with a particular focus on the solutions developed to access the information about the Polish Biobanking Network and the Directory BBMRI-ERIC collections that enable effective cooperation between the current and future members of the European and Polish network of biobanks associated under BBMRI.eu-ERIC. There will be also discussion on social, ethical, and legal implications of biobanking. The patient’s perspective on the topic will be also present.

This training is composed of two days:
The first day session will present the EJP RD Virtual Platform tool that enables access to extensive information about patient registries, biobanks, repositories, research analysis and data for future studies. There will be discussions on the issues related to the implementation of standard operating procedures referred to collection, transportation and provision of biological material developed by the members of the BBMRI.pl Consortium. There will be a closer look at the biobank and data management tools like the Biobank Management System (BBMS), the Central IT Platform of the Polish Biobanking Network (PBN) (https://biobanks.pl) or the Virtual Microscope a web application enabling access to digital histopatological slides for multiple users in Open Research Data system (https://digithalpathology.pl). In the end, there will be a virtual tour presenting robotic solutions applied in biorepository of the Fahrenheit Biobank BBMRI.pl in Medical University of Gdansk.

The second day will focus on Biobanking solutions applied in rare disease non-commercial clinical studies and the scientific potential of imaging techniques in translational studies. ELSI aspects of the Polish data protection governed by the General Data Protection Regulation (GDPR) in biobanking, data privacy rules for the health research sector including the perspective of a patient representative.

The training workshop is organized as a series of lectures presented by experts in the specific topics. Interaction between participants and lecturers will be facilitated by moderated question & answer sessions.

The workshop is open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives. 

REGISTRATION
Online registration form
Registration deadline is 10 November 2022, at noon
IMPORTANT: To ensure active participation and exchange with teaching staff and participants, a limited number of participants will be admitted. A selection process will be applied by an ad-hoc committee (EJP RD representatives who organized the Training), using as selection criteria, the applicants’ backgrounds and their activities with reference to rare diseases research and/or biobanks.

A confirmation e-mail will be sent, by 18 November 2022 to the selected participants to the course.  

Applicants who are not contacted by email should consider themselves not selected but will be kept on a waiting list until 23 November 2022.  

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

At the end of the training, participants will be requested to fill an online questionnaire as a feedback for learning and impact assessment.

A certificate of attendance will be given at the end to the participants who have attended the entire workshop. No credits of Continuing Education in Medicine will be issued.

The language of the training workshop is English.

Online. Details for the connection will be provided in advance to confirmed participants.

This Training workshop is organized by Medical University of Gdansk, Gdansk, Poland (MUG) and Fondazione Telethon (FTELE).

If you have questions, please contact the course organisers through this email address: Marika Bolcewicz (marika.bolcewicz@gumed.edu.pl)
Please, indicate in the Subject: EJP RD Biobanking Training