History
OxalEurope was founded in 2007 by Pierre Cochat (France), Bernd Hoppe (Germany), Jaap Groothoff (Netherlands), Mario de Marchi (Italy), Sally Hulton (UK) and Eduardo Salido (Spain) in Amsterdam. The aim was to bring together European scientists and physicians involved in PH and to build a European platform for basic and clinical research on PH.
To this, the group was extended with more scientists and geneticists: Christopher Danpure (UK), Gill Rumsby (UK), Bodo Beck (Germany) and Giorgia Mandrile (Italy). These people formed the core group of OE together with the founders. The first step next was to build a European database on PH, the so-called OxalEurope database. We first setup an access-based registry organized by Anne-Marie Schott (Germany), for which we started to get ethical approval and informed consents from patients to get them registered.
Christiaan van Woerden (Netherlands) laid the foundation for this database in 2012, in which we implemented data from France, the Netherlands, Poland, Switerzland, Italy, Spain, UK and Germany. Then, van Woerden, together with Giorgia Mandrile (Italy), compiled and analysed all the data obtained, which was published in the first OE registry paper in 2014.
In 2015, Sander Garrelfs (NL) created a GCP Castor-based database and transferred all OE data into this database after an extended and comprehensive on-site check of all the existing data. To date, the OE database is still the largest existing database on PH worldwide. During the last 10 years, more than 15 papers based on data of the OE registry have occurred.
In 2023, Oxaleurope published in collaboration with ERKNet, ESPN and ERA-EDTA a paper on Practice Guidelines on Primary Hyperoxaluria (Nature Reviews Nephrology 2023), which was an update of the Guidelines by Cochat et al from 2010. Over 20 OE meetings have been organised, including the 8th International PH Workshop in London (Gill Rumsby and Chris Danpure, 2007), 10th International PH Workshop in Bonn (Bernd Hoppe, 2012), the 12th International PH Workshop in Tenerife (Eduardo Salido and Cristina Martin Higueras, 2017) a joined OxalEurope-OxalAfrica meeting in Cairo (Neveen Soliman, 2018), the first hybrid meeting in Amsterdam (Jaap Groothoff, 2020), the International Hyperoxaluria Conference in Berlin (Felix Knauf, 2022) and the 14th International Hyperoxaluria workshop in Perugia (Barbara Cellini, 2024). In 2022, Cristina Martin Higueras (Spain) organised the first OE meeting for patients and caretakers, gathering more than 80 patients across Europe (in Berlin, Germany). The Oxaleurope Foundation was formed in 2024 with the aim to professionalize the Oxaleurope platform.
Here the scheme of events in chronological order:
The OxalEurope registry and website were created (it required various board meetings in Amsterdam, Paris, Frankfurt, Lyon and Cologne between 2007 and 2009).
