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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 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 35 centers from 23 countries. 

 

In September 2022, 25 centers have started collection and 10 other centers are awaiting judicial and/or ethical approval. Thus far already over 1100 cases have been entered, making this the largest HDFN cohort to be ever reported on.

We will also be collaborating in several projects in Sub-Saharan Africa researchers and clinicians from the Kilimanjaro Christian Medical Center in Tanzania, among others.

Updates and information on the DIONYSUS study will be posted here!

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

Newsletters:

May 2022

August 2022

September 2022

(below the map the list of participating centers)

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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:

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  • Karolinska University Hospital, Sweden, Eleonor Tiblad, Kajsa Bohlin and Iris Hellsing

 

  • University Medical Center Ljubljana, Slovenia, Jana Lozar Krivec, Matej Trdan and Tanja Premru- Sršen, Lilijana Kornhauser-Cerar, Vita Mesarič

 

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

 

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

 

  • Children's Hospital “Vittore Buzzi” Milan, Italy, Chiara Bianchi, Chiara Nava, Sophia, 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, Eduardo Ribeiro, Marcella Vasconcelos Vaena

 

  • Sheba Medical Center Tel Aviv, Israel, Yoav Yinon

 

  • Centre Hospitalier Universitaire de Lille, France, Veronique Debarge, Thameur Rakza, Kevin le Duc, Isabelle Sense, Louise Ghesquiere

 

  • 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, Enric Casanovas and Obdulia Alejos Abad

 

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

 

  • Instituto Nacional de Perinatologia Mexico City, Mexico, Antonio Montoya and Raigam Jafet Martínez Portilla

 

  • The Rotunda Hospital Dublin, Ireland, Fergal Malone, Jen Donnelly, Etaoin Kent, Zara Molphy and David Mackin

 

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

 

  • Pränatal Medizin München, Germany, Karl-Philipp Gloning, Alexander Hohnecker and Angelika Springer

 

  • Hospital La Paz Madrid, Spain, Eugenia Antolín, Marta Mencia Ybarra Zavala, Aurora Llorente Viejo

 

  • Mount Sinai Hospital Toronto, Canada, Rory Windrim, Greg Ryan, Evangelia Vlachodimitropoulou Koumoutsea

 

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

 

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

 

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

 

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

 

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

 

  • University of Birmingham, UK, Mark D Kilby, James Castleman, Leo Gurney

 

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

 

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

 

  • Universitätsklinikum Gießen, Germany, Ivonne Bedei, Roland Axt-Fliedner, Aline Wolter, Rahel Schuler, Nina Katharina Thom

 

  • São João Hospital, Porto, Portugal, Alexandra Matias and Joana Nunes

 

  • 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 and Johanna Rath

 

  • Uniklinik Köln, Germany, Christoph Berg

 

  • Charité - Universitätsmedizin Berlin, Germany, Beate Mayer, Christoph Dame and Stefan Verlohren

 

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