BBMRI-ERIC Podcast

“Without the patient citizen’s data, there is no future for research.”Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” - which will serve research, innovation, policy making and regulatory purposes. The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data. Why does communicating about EHDS matter? Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.Further reading (in order of contribution):BBMRI-ERIC ELSI: bbmri-eric.eu/elsi/EHDS2Pilot Project: ehds2pilot.euSpanish Research Council: csic.es/en/csicEuropean Patient’s Forum: eu-patient.euELGA: elga.gv.atKristiania University: kristiania.no/en/about-kristiania/employees/school-of-communication-leadership-and-marketing/departement-of-communication/audra-diers-lawson/CPME: cpme.euEFPIA: efpia.euDigital Europe: digitaleurope.orgFrench Health Data Hub: www.health-data-hub.fr/FINData: findata.fi/en/MyGenome Portal: portaal.geenidoonor.ee/sisselogimineGerman Portal for Medical Research Data: medizininformatik-initiative.de/en/medical-research-request-health-data-centrallyHealth Data Lab: healthdatalab.deHIQA: hiqa.ie/about-usEHDS - European Commission: health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en

Episode 24 introduces you to the canSERV project that focuses on providing over 400 cutting-edge and customised cancer research services. BBMRI-ERIC acts as coordinator for canSERV.The services and tools are made available to the cancer research community EU wide, enable innovative R&D projects and foster precision medicine for patients’ benefit across Europe.Experts from the project walk listeners through its 4th Challenge-Driven Call on “Training the Next Generation of Cancer Researchers”.Early Career Cancer Researchers, for example first-stage researchers (PhD students, junior researchers without PhD), or recognised researchers (postdocs, assistant professors, young investigators) world-wide are invited to apply for free access to cutting-edge transnational services with an indicative overall budget for this call of EUR 500,000.The primary objective of this call is to empower early career scientists through access to research services and training in order to advance their scientific merits and careers.Originally a live webinar, the podcast is presented by canSERV consortium members Saba Abdulghani, Jens Habermann, Vitor Martin Dos Santos, Enzo Medico, Manuela Pausan and Pauline Audergon. The Q&A that followed after is being developed into a FAQ. Explore the project, and apply to the Open Call, by visiting the canSERV website.

“You cannot be a proper researcher without curiosity and curiosity is not only just for science, it’s for living.”Meet Eva Ortega-Paino who, until recently was National Node Director for Spain. This episode profiles her career which has taken her to Secretary General for Research, Ministry of Science, Innovation and Universities, Spain.Spain joined BBMRI-ERIC as an observer three years ago and Eva was their first Director based at the Spanish National Platform for Biobank and Biomodels - Instituto de Salud Carlos III.Eva was far from new to biobanking, having already been involved with BBMRI Sweden. In fact, Eva’s career spans 32-years; it started with a PhD in Chemical Sciences and includes experience across several sectors - academic research, healthcare, industry and the third sector. As she settles into her role at the Ministry, we thought it would be a good time to explore her achievements and hear her advice for young researchers.Further reading:BBMRI Spain: https://www.isciiibiobanksbiomodels.es/en/BBMRI Podcast: https://www.bbmri-eric.eu/bbmri-eric/bbmri-eric-podcast/Eva’s Ministry profile page: https://www.ciencia.gob.es/en/Ministerio/Altos-cargos/Secretaria-general-de-investigacion.htmlMinistry of Science, Innovation and Universities: https://www.ciencia.gob.es/en/

Welcome to this Europe Biobank Week Congress Radio special. It recorded live from the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024.The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.This episode features the State-of-the-Art speech delivered by Dr. Bo Franzén, Senior Researcher at Cancer Centre Karolinska of the Karolinska Institutet, during the Quality Management and Pre-Analytics session. About Karolinska InstitutetKarolinska Institutet is one of the world’s leading medical universities. Karolinska Institutet accounts for the single largest share of all academic medical research conducted in Sweden and offers the country’s broadest range of education in medicine and health sciences. The Nobel Assembly at Karolinska Institutet selects the Nobel laureates in Physiology or Medicine.The tilte of Dr. Franzén’s talk is: ‘Minimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine’ and it was delivered in the Hofburg’s Zeremoniensaal.ResourcesKarolinska Institutet: https://ki.se/enMinimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine: https://pubmed.ncbi.nlm.nih.gov/38519839/Europe Biobank Week 2024 – Day Three: https://www.europebiobankweek.eu/ebw24live/ebw24-live-congress-radio-europe-biobank-week-2024-day-three/Europe Biobank Week Podcasts: https://www.europebiobankweek.eu/tag/podcast/

Welcome to this Europe Biobank Week Congress Radio special. It was recorded live at the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024.The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.Keynotes are an opportunity to hear from leading experts in the field. This episode features the second keynote of the congress, delivered by Dr Gillian Bartlett, Associate Dean for Graduate Research Education, University of Missouri and Co-Director of the SOM Umbrella PhD Program.About underrepresented populationsThe title of Dr. Bartlett’s talk is ‘Biobanking with Underrepresented Populations: The Critical Role of Participant engagement’ and it was delivered to a packed plenary hall. Dr. Bartlett underscores the importance of including still underrepresented populations in medical research with examples from e.g., the All of Us research programme.ResourcesAll of Us Research Programme: https://allofus.nih.gov/Dr. Gillian Bartlett EBW24 news article: https://www.europebiobankweek.eu/ebw24live/ebw24live-dr-gillian-bartlett-university-of-missouri-delivers-keynote-lecture-ii-biobanking-with-underrepresented-populations-the-critical-role-of-participant/Short interview at EBW24:https://www.europebiobankweek.eu/ebw24live/ebw24-live-congress-radio-europe-biobank-week-2024-day-three/Europe Biobank Week Podcasts: www.europebiobankweek.eu/tag/podcast/

Welcome to this Europe Biobank Week Congress Radio special. It recorded live from the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024.The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.Keynotes are an opportunity to hear from leading experts in the field. This episode features the first keynote that was delivered by Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank.About UK BiobankThe biobank involves 500,000 participants and it is the largest deeply characterised prospective study available for any type of health research that is in the public interest. More than 30,000 researchers worldwide currently use it and generated more than 3000 papers in 2023 alone.The title of Prof. Collins' talk is ‘UK Biobank: scale, depth, duration … but, most importantly, accessibility’ and it was delivered to a packed plenary hall.We interviewed Sir Rory to ask what he hoped delegates would take from his talk. You can find that piece within day two of #EBW24 Congress Radio found at europebiobankweek.eu. ResourcesUK Biobank: www.ukbiobank.ac.ukSir Rory Collins EBW24 abstract: www.europebiobankweek.eu/ebw24-previews/ebw24-previews-keynote-with-sir-rory-collins/Europe Biobank Week Podcasts: www.europebiobankweek.eu/tag/podcast/

“Healthcare biobanking and healthcare biobanks are playing an increasingly important role, not only in the biomedical research, but also in transferring knowledge to the health system”. Marialuisa Lavitrano, National Node Director, BBMRI.it.This is part two of a two part podcast which shares impact stories from across BBMRI-ERIC’s Member States and communities that were presented at the BBMRI-ERIC 10th anniversary workshop. Each story highlights the diverse expertise and significant impact of the research infrastructure that our community helps shape and benefits from.In this episode, you will hear impact stories from Quality Management and Biobanking Development, presented by Andrea Wutte, Head of BBMRI QM, and Saba Abdulghani, Head of BBMRI Biobanking Development.You will first meet Lila Kallio, Auria Biobank Director and Marialuisa Lavitrano, National Node Director of BBMRI Italy. Then you will hear impact stories from Katerina Novakova, representing BBMRI Czech Republic and Maria Judit Molnar, National Node Director of BBMRI Hungary. Listen to part one to hear stories from our IT Service and ELSI services and research.   Learn more about BBMRI-ERIC: https://www.bbmri-eric.eu

Visit the fourth and final day of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates. EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. This episode features contributions from:Prof. Josef Haas, Medical University GrazNaila Loudini, UMC UtrechtNikolai Pace, University of Malta Congress delegates: Stefan Kummer - VetBiobank, Julia Huber - Universitätsklinikum Freiburg - CCCF-Biobank, Massimiliano Borsani - CNR - BBMRI.it and Nhutuyen Nguyen - German Biobank NodeSee you next year in Bologna, Italy, for #EBW25?More information:EBW: europebiobankweek.eu Twitter: twitter.com/BiobankWeekLinkedIn: www.linkedin.com/company/europe-biobank-week 

Visit day three of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates.  EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. This episode features contributions from:Dr. Ayat Salman, ESBBDr. Gillian Barlett, Associate Dean for Graduate Research Education at the School of Medicine at the University of Missouri Congress delegates - Michael Neumann and Marthe BierensPoster and oral presenters - Annemieke De Wilde, Emanuel Sander, Andrea Wutte, Rogier van der Stijl and Bo FranzénMore information:EBW: europebiobankweek.eu Research All of Us: www.researchallofus.orgMinimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine : https://pubmed.ncbi.nlm.nih.gov/38519839/Twitter: twitter.com/BiobankWeekLinkedIn: www.linkedin.com/company/europe-biobank-week 

Visit day two of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates. EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. This episode features contributions from:Professor Martin Polaschek, Austrian Federal Minister of Education Science and Research Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank Dr Annelies Debucquoy and Dr Ronny Baber, EBW24 Programme Committee membersEBW24 congress delegatesFrancesca Trapani, Scientific Director/ Group Leader presso Boehringer IngelheimKirsten Tief-Kuery, Sales Leader Genetic Analysis EMEA, Thermo Fisher Scientific The Lerchenfeld Quartett More information: www.europebiobankweek.euTwitter: twitter.com/BiobankWeekLinkedIn: www.linkedin.com/company/europe-biobank-week The Lerchenfeld Quarter: lerchenfeldquartett.com