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X-WR-CALDESC:Events for ERDERA
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DTSTART:20240101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251209
DTEND;VALUE=DATE:20251211
DTSTAMP:20260509T145554
CREATED:20251013T095036Z
LAST-MODIFIED:20251222T151705Z
UID:7864-1765238400-1765411199@erdera.org
SUMMARY:2nd International Conference on Clinical Research Networks: Connected for impact
DESCRIPTION:ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases\, co-organised in collaboration with Rare Disease International and the International Rare Diseases Research Consortium (IRDiRC). \nDetails: \nDate: 9–10 December 2025 \nFormat: Hybrid – online and in-person participation available \nVenue: Marsilius College\, Heidelberg\, Germany \nView the speaker bios here\n  \nProgramme\nTimes are in CET. \nTuesday December 9th\, 2025\n12.00 – 13.00 – Light lunch reception\n13.00 – 14.00 – Plenary session: Opening Session – Setting the scene\n\nDavid Pearce\, International Rare Diseases Research Consortium (IRDiRC) Professor Department Pediatrics\, Sanford School of Medicine of the University of South Dakota (United States of America)\nAlexandra Heumber Perry\, Chief Executive Officer\, Rare Diseases International (France)\nBaptiste Eluard\, Senior Scientific Project Manager at the European Rare Disease Research Alliance (ERDERA)\n\n14.00 – 15.30 – Plenary session 1: Global efforts in Real World Evidence (RWE) and data collection\nSession Chair: Franz Schaefer\, Hospital Franz Schaefer\, MD\, Professor of Pediatrics Head\, Division of Pediatric Nephrology\, Heidelberg University Coordinator\, European Reference Network for Rare Kidney Disease (ERKNet) Co-Lead\, Clinical Research Network of the European Rare Disease Research Alliance (ERDERA) \n\nCarla Jonker\, Scientific Administrator\, Real World Evidence workstream (RWE); Data Analytics and Methods Task Force (TDA); European Medicines Agency (EMA) (The Netherlands)\nRamona Walls\, Data Collaboration Center Director\, C-Path (United States of America)\nProf. Thomas Klockgether\, German Center for Neurodegenerative Diseases (DZNE) (Germany)\nPat Furlong\, President\, Parent Project Muscular Dystrophy (United States of America)\n\n15.30 – 16.00 – Coffee and networking break\n16.00 – 18.00 – Plenary session 2: New approaches in diagnostics & clinical research\nSession Chair: Yanis Mimouni (Associate Director\, Regulatory Science\, C-Path) \n\nTudor Groza\, Co-Lead AI and Data Science\, Maternal and Child Health Research Institute\, KK Women’s’ and Children’s Hospital Singapore\, Principal Scientist\, Bioinformatics Institute\, A*STAR (Singapore)\nSergi Aguiló Castillo\, RadboudUMC (The Netherlands)\nAlexander Hoischen\, Radboudumc Nijmegen (The Netherlands)\nCécile Ollivier\, Vice President Global Affairs\, Critical Path Institute (The Netherlands)\nDustin O’Dell\, Cofounder & CEO\, SymetryML Inc and Decentra Health (United States of America)\nChris Hendriksz\, A Rare Cause (South Africa)\nYong Chen\, Ph.D.\, FASA\, FACMI\, Professor of Biostatistics\, Director of the Penn Computing\, Inference and Learning lab\, Founding Director of the Center for Health AI and Synthesis of Evidence (CHASE)\, Perelman School of Medicine at the University of Pennsylvania (USA)\n\n18.30 – 20.30 – Networking reception\nWednesday December 10th\, 2025\n9.00 – 11.00 – Parallel workshops\nPARALLEL WORKSHOP 1: Learnings from Low and Middle-Income Countries: Ensuring Representation in Clinical Research Data and Registries \nSession Chairs: Daria Julkowska\, Scientific coordinator of the European Rare Diseases Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics (IT GGB) at INSERM\,\nMonica Drum\, Senior Global Programmes Manager\, Rare Diseases International (RDI) \n\nChris Hendriksz\, A Rare Cause (United Kingdom / South Africa)\nRoberto Giugliani\, Professor of Genetics at the Federal University of Rio Grande do Sul (UFRGS)\, Chief of the Clinical Research Group in Clinical Genetics at Hospital de Clinicas de Porto Alegre (HCPA)\, and Executive Director of Casa dos Raros\, in Porto Alegre (Brazil)\nRobin Sarfati\, CTO at Tekkare (France)\nProf. Mohamed Hassany\, Assistant Minister of Health for Projects and Public Health Initiatives Professional Affiliation: Ministry of Health and Population (Egypt)\n\nPARALLEL WORKSHOP 2: Rules of engagement in multi-stakeholder pre-competitive environments \nSession Chairs: Samantha Parker Patient Engagement Lead Rare Diseases at Italfarmaco\, Vice-Chair IRDiRC;\nHeidrun Hildebrand\, Alliance Manager Pediatric Development; Bayer Pharmaceuticals \n\nRicardo Fernandes\, Chief Medical Officer at conect4children-stichting\nCécile Ollivier\, Vice President Global Affairs\, Critical Path Institute (The Netherlands)\nBegoña Nafria Escalera\, Head of Patient Engagement in Research Area\, Paediatric Cancer Center Barcelona – PCCB\, Institut de Recerca Sant Joan de Déu (Spain)\nVolker Straub\, Harold Macmillan Professor of Medicine; Director\, The John Walton Muscular Dystrophy Research Centre; Deputy Dean\, Translational and Clinical Research Institute\, Faculty of Medical Sciences\nNewcastle University and Newcastle Hospitals NHS Foundation Trust (United Kingdom)\nKristina An Haack\, MD\, Senior Project Head Rare Development\, Inherited NeuroMetabolic Diseases\, Pediatric Network Lead (France)\nVictoria Hedley\, Together4Rare (United Kingdom)\n\n11.00 – 11.30 – Coffee and networking break\n11.30 – 12.30 – Plenary session 3: Reporting back from parallel workshops & discussion\n\nMonica Drum\, Senior Global Programmes Manager\, Rare Diseases International (France)\nDaria Julkowska\, Scientific coordinator of the European Rare Diseases Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics (IT GGB) at INSERM (France)\nHeidrun Hildebrand\, Alliance Manager Pediatric Development; Bayer Pharmaceuticals (Germany)\n\n12.30 – 13.30 – Lunch break\n13.30 – 15.00 – Plenary session 4: Global trials\, local impact: Empowering access and engagement in international clinical research\, role of patients and broad partnerships\nSession Chair: Alexandra Heumber Perry\, Chief Executive Officer\, Rare Diseases International (France) \n\nDr. Sudheendra Rao\, N R\, Scientific Advisor\, Organization for Rare Diseases India\nChristine Mutena\, Co-Founder at Rare Disorders Kenya\nBegoña Nafria Escalera\, Head – Patient Engagement in Research Area\, Pediatric Cancer Center Barcelona\, Sant Joan de Deu SJD\, Spain; Conect4Children Stichting\nDr Roberto Giugliani\, Professor of Genetics at the Federal University of Rio Grande do Sul (UFRGS)\, Chief of the Clinical Research Group in Clinical Genetics at Hospital de Clinicas de Porto Alegre (HCPA)\, and Executive Director of Casa dos Raros\, in Porto Alegre (Brazil)\n\n15.00 – 15.30 – Coffee and networking break\n15.30 – 17.00 – Plenary session 5: Global networks and models of care in high income and LMIC – The Duchenne experience\nSession Chair: David Pearce\, International Rare Diseases Research Consortium (IRDiRC) Professor Department Pediatrics\, Sanford School of Medicine of the University of South Dakota (United States of America) \n\nAnna Thetford\, Registered Nurse; Program Director (Clinical)\, Rare Care Centre\, Perth\, Western (Australia)\nKarolína Podolská\, MD\, Internal physician and coordinator of Center for adults with muscular dystrophy\, General University Hospital in Prague\, Czech Republic\, Accredited Duchenne Centers Program Manager\nRicardo Fernandes\, Chief Medical Officer at conect4children-stichting\nKarolina Śledzińska\, MD\, PhD\, Pediatrician\, Clinical Geneticist\, Department of Pediatrics\, Hematology and Oncology\, Medical University of Gdansk\, Poland – ONLINE\n\n17.00 – 17.30 – Closing of the conference
URL:https://erdera.org/event/international-conference-on-clinical-research-networks/
CATEGORIES:Clinical Research
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2025/09/Erdera-CRN-Conference-verd-2_page-0002.jpg
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