Vanwege het internationale karakter van deze studie is deze studiepagina in het Engels.
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The DIONYSUS
worlDwIde cOllaboratioN for hemolYtic diSease of the fetUS and newborn study

International collaborations are of utmost importance to gain a better understanding of rare diseases and improve care for those affected. So, we are very glad to announce that we have recently launched an international collaborative study for Hemolytic Disease of the Fetus and Newborn (HDFN)! The DIONYSUS (worlDwIde cOllaboratioN for hemolYtic diSease of the fetUS and newborn) study, initiated by the Leiden University Medical Center, Sanquin Research and Sanquin Diagnostic Services, aims to gain a better insight and understanding into what prenatal and postnatal treatments for pregnancies and newborns complicated with HDFN are used in expert fetal care centers around the world. For this, we will be looking into retrospective data of cases affected by HDFN, in close collaboration with 36 centers from 24 countries. We are currently in the preparation stages for the start of data collection and hope to provide you with the first results by the end of this year.

We will also be working on gaining more contacts on the Asian, African and European continent in order to assess the feasibility of similar studies for future undertakings.

Updates and information on the study will be posted here!

For more information: d.p.de_winter@lumc.nl

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With special thanks to all those who already expressed their interest and/or are involved in the DIONYSUS study, in no particular order:

  • Karolinska Institutet, Sweden, Eleonor Tiblad, Kajsa Bohlin and Iris Hellsing

  • University Medical Center Ljubljana, Slovenia, Jana Lozar Krivec, Matej Trdan and Tanja Premru- Sršen

  • The Queen Elizabeth Hospital Glasgow, Scotland, Marie Anne Ledingham, Janet Brennand

  • University Hospital KU Leuven, Belgium, Roland Devlieger, Anne Debeer and Sarah Verbeeck

  • Children's Hospital “Vittore Buzzi” Milan, Italy, Mariano Matteo Lanna, Francesco Cavigioli

  • Instituto Fernandes Figueira, Rio de Janeiro, Brazil, Maria Cristina Pessoa dos Santos, Cynthia Amaral, Bebeth Moreira, Fernando Maia Peixoto Filho

  • Sheba Medical Center Tel Aviv, Israel, Yoav Yinon

  • Clínica Universidad de los Andes, Santiago, Chile, Sebastián Illanes, Pilar Diaz

  • The Mother Baby Center at Abbott Northwestern and Children's Minnesota, USA, Saul Snowise, Andrea Lampland

  • Copenhagen University Hospital Rigshopitalet, Denmark, Emilie Thorup Nielsen, Olav Bennike Bjørn Petersen, Frederik Clausen and Morten Dziegiel

  • Shanghai First Maternity and Infant Hospital, People’s Republic of China, Luming Sun and Ming Zhou

  • Sant Pau Hospital, Barcelona, Spain, Juan Parra, Eli Moliner and Enric Casanovas

  • Stellenbosch University, South-Africa, Lut Geerts and Lizelle van Wyk

  • Instituto Nacional de Perinatologia Mexico City, Mexico, Salvador Espino y Sosa, Raigam Jafet Martínez Portilla

  • The Rotunda Hospital Dublin, Ireland, Fergal Malone, Jen Donnelly and Etaoin Kent

  • Helsinki University Hospital, Finland, Vedran Stefanovic, Susanna Sainio and Riina Jernman

  • Pränatal Medizin München, Germany, Karl-Philipp Glöning and Alexander Hohnecker

  • Hospital La Paz Madrid, Spain, Eugenia Antolín, Lola Elorza, Aurora Viejo

  • Mount Sinai Hospital Toronto, Canada, Rory Windrim

  • Hospital Italiano de Buenos Aires, Argentina, Lucas Otaño, Cesar Meller, Gonzalo Luis Mariani

  • Hôpital d'Enfants Armand-Trousseau Paris, France, Paul Maurice and Jean-Marie Jouannic

  • Clinica Las Condes, Santiago, Chile, Waldo Sepulveda

  • Medical University of Graz, Austria, Philipp Klaritsch, Katharina Eisnecker

  • Mater Mothers’ Hospital, Brisbane, Australia, Helen Liley and Glenn Gardener

  • Seattle Children’s Hospital, USA, Bettina Paek and Martin Walker

  • Children’s Memorial Hermann Hospital, Houston, USA, Eric Bergh and Anthony Johnson

  • University of Birmingham, UK, Mark D Kilby

  • St. Michael’s Hospital Bristol, Rachel Liebling and Timothy Overton

  • Levine Children’s Hospital, Charlotte, USA, Matthew Saxonhouse

  • Universitätsklinikum Gießen, Germany, Ivonne Bedei and Roland Axt-Fliedner

  • São João Hospital, Porto, Portugal, Alexandra Matias

  • St George’s University Hospital, UK, Smriti Prasad and Asma Khalil

  • Liverpool Women’s Hospital, UK, Borna Poljak and Asma Khalil

  • Universitätsklinikum Bonn, Germany, Annegret Geipel

  • Uniklinik Köln, Germany, Christoph Berg

  • Charité - Universitätsmedizin Berlin, Germany, Wolfgang Henrich and Beate Mayer

  • Leiden University Medical Center and Sanquin Diagnostics, The Netherlands, Derek de Winter, Joanne Verweij, Carolien Zwiers, Dick Oepkes, Masja de Haas, Ellen van der Schoot and Enrico Lopriore.