From sustainable biomedical research perspective biobanks are becoming more and more vital and the discussion about the management of connected clinical data and data acquisition from Electronic Health Records is intensifying. Because of different standards of data collection, national policies, legal and ethical considerations collaborating with biobanks to conduct research on larger cohorts can be a challenge of it’s own. But what are the existing solutions and near future in biobanking? Let’s find out together!
The three-day seminar will cover many topics for ethical, responsible and sustainable biobanking, challenges and solutions of clinical data management. The seminar includes lectures from scientists of INTEGROMED consortium: Weizmann Institute of Science (Israel), University of Dundee (United Kingdom), Lund University (Sweden), Latvian Biomedical Research and Study centre (Latvia) and guests from BBMRI-ERIC network, Estonian biobank in University of Tartu.
This seminar is aimed at biomedical students and scientists who are currently working or planning to work with samples and data acquired from biobanks. Participants don’t need any prior experience.
Webinar is free of charge, times in agenda are Eastern European Time.
Application is mandatory. If you consider to listen only specific lectures, you can still aplly to receive the link to the online seminar and receive record after event.
Preliminary agenda
Date: Monday 5 – Wednesday 7 October 2020
Application: closed
Application deadline: 2nd October
Participation: open application
Contact: Laura Ansone laura.ansone[at]biomed.lu.lv
Agenda
October 5 | ICT and infrastructure: information technology for sustainability in biobanking | Lecturer, organization |
10:00-11:00 | Practical principles for data structuring and analysis The new paradigm in research and biobanking is to re-use data. This requires an infrastructure to find data, describe data, and organize access: FAIR principles. |
Prof. Emily Jefferson University of Dundee |
11:00-12:00 | BBMRI-ERIC Negotiator service for easier data/sample acquisition from multiple candidate biobanks The big challenges that medical sciences face today require a vast amount of data but collecting this data from different biobanks is a challenge of its own. Negotiator supports researchers with a unified search process, it’s connected to the already established BBMRI-ERIC Directory, the biggest biobanking catalog on the globe. |
Dr. Petr Holub BBMRI-ERIC |
12:00-13:30 | Leveraging EHRs for research – opportunities, challenges and the three classes of tasks Health data is increasingly being generated at massive scales, at various levels of phenotyping, and from different types of resources. This poses different challenges but also opportunities. Any application or research on EHRs depends on the ability to extract meaningful information from the data source, in the goal of improving the understanding of human health. This can be divided into three types of analysis tasks: description, prediction, and counterfactual prediction. An example of estimating the effect of cesarean delivery on long term childhood health from EHR data. |
Ayya Keshet Weizmann Institute of Science |
13:30-14:00 | Lunch break | |
14:00-15:00 | How to collect human tissue data- standards in clinics Human tissues and connected data are critical to support biomedical research and to advance translational research focused on identifying and characterizing approaches to individualized (personalized) medical care. Nevertheless, there are issues in collecting, processing, and storing human tissues and associated information. Research biobanks are often not familiar with standards in clinics used to collect human tissue data and what aspects should be considered using this data. |
Dr. Ulrika Krus Lund University |
15:00-16:00 | Ethically and socially responsible governance of research biobanks in Latvia: opinions of researchers and general public Public awareness and engagement are important requirements for successful and sustainable functioning of research biobanks, but researchers, who are the end-users of research biobanks can describe the functionality. The national biobank community faces the need to integrate the national network of biobanks in the European Research Area to promote international collaboration in biomedical research. |
Dr. Vita Rovite Latvian Biomedical Research and Study Centre |
16:00-16:30 | Quiz and discussion | |
October 6 | Practical considerations: participant and patient involvement, future role of biobanks | Lecturer, organization |
10:00-11:00 | From biobanking to personalized medicine Estonian Biobank is a population-based biobank of the Institute of Genomics at the University of Tartu. In total, Estonian biobank has recruited 200+ thousand people, it makes about 20% of the adult population in Estonia. The goal is to use the genetic data together with the environmental and health behavior data as the basis for implementing the personalized medicine and personal prevention programs in Estonia. |
Prof. Andres Metspalu University of Tartu |
11:00-12:00 | Participant/ patient involvement: in-depth look on SHARE initiative for recruitment research participants and donors Without donations from patients and healthy volunteers biobanks couldn’t exist. The patient provides personal information and biomaterial and contributes to the biobank, which makes new scientific research possible. However, there are several difficulties in how to get the patient involved. SHARE initiative is created to establish a register of people interested in participating in health research and agree to use the coded data in their various NHS computer records to check whether they might be suitable for health research studies. |
Prof. Colin Palmer University of Dundee |
12:00-13:00 | Investigator-driven clinical trials for development of precision medicine approaches Investigator-driven clinical trials (IDCT) are clinical trials that are instigated by academic researchers and are aimed at acquiring scientific knowledge and evidence to improve patient care. Such studies deal with potential diagnostic and therapeutic innovations that do not attract or could even be against commercial interest. IDCTs form a key part of patient-oriented clinical research and create the basis for continually improving patient care. A talk-through the process of establishing IDCT for precision medicine development. |
Dr. Alex Doney University of Dundee |
13:00-14:00 | Lunch break | |
14:00-15:00 | Biobank consent models: towards increased participant engagement in biobanking Biobanks depend not only on their ability to obtain samples and data for research, but also on reliable informed consent procedures for participants. Various consent models have been developed to manage the particular challenge for consent in the biobank context, which is to meet both, the specific needs of biobank-based research and the expectations of research participants and other stakeholder groups. It is vital for biobank sustainability to take the ethical and societal implications into account. |
Dr. Melanie Goisauf BBMRI-ERIC |
15:00-15:30 | Quiz and discussion | |
October 7 | Microsoft Cloud for Healthcare, Research, and Life Science | |
10:00-10:10 10:10-10:40 10:40-11:30 11:30-12:30 12:30-13:00 |
Opening |