OxalEurope keeps the biggest online web-secured database of patients with Primary Hyperoxaluria worldwide, with more than a thousand patients already registered. The OxalEurope Registry (OER) is a result of a collaborative project between partners and their efforts to provide health and wellness to patients suffering from Primary Hyperoxaluria.

The OxalEurope Registry uses Castor Electronic Data Capture system (based in Amsterdam, The Netherlands) as a cloud-based clinical data management platform. Data entry and data collection are accomplished with on-line forms that contain the requisite data fields. The information introduced in this registry follows the General Data Protection Regulation (EU) 2016/679, and has been approved by Ethical Committees at local sites. If you are interested in becoming a participant site for registering data in our database, either as European or non-European partner, you can contact the principal and coordinating sites, which will guide you on the procedure.

Researchers from Academia and Industry are welcome to apply for data access, on an anonymized basis, upon request to the OxalEurope registry board. The application form designated is available below. The OxalEurope registry board will review these proposals and provide feedback in a time frame of two weeks. Send your request to registry@oxaleurope.org. Data access policy of OxalEurope registry is available here.

If you already have your login credentials for the OxalEurope registry, please press the login button on the Castor website (www.castoredc.com). If you do not have credentials, please get in contact with Dr. S.F. Garrelfs at s.f.garrelfs(at)amsterdamumc.nl to apply for your personalized login credentials.

Data_OxalEurope Committee_Feedback.pdf

OxalEurope Registry Board:

Shabbir Moochhala, MD, PhD (UK)
Giorgia Mandrile, MD, PhD (Italy)
Cristina Martin Higueras, PhD (Spain)
Bodo Beck, MD (Germany)

Project Management Team:

Project coordinator: Jaap Groothoff, MD, PhD (The Netherlands)
Project Manager: Sander F. Garrelfs, MD (The Netherlands)
Statistician: Hessel Peter Sengers (The Netherlands)

Principal sites:

Amsterdam UMC, location AMC, Amsterdam, The Netherlands
University of Cologne, Institute of Human Genetics, Germany

Coordinating sites:

Birmingham Children’s Hospital, Birmingham, UK
Royal Free Hospital, London, UK
University of Cologne, Germany
Hospices Civils de Lyon, France
Hospital Universitario de Canarias, Tenerife, Spain
San Luigi University Hospital, Orbassano, Torino, Italy

Current registry-related studies:

Infantile oxalosis
Retrospective analysis of outcomes in transplantation
Discordant families

Past registry-related studies:

OxalEurope report on Primary Hyperoxaluria type 3.
Martin-Higueras C, Garrelfs SF, Groothoff JW, Jacob DE, Moochhala SH, Bacchetta J, Acquaviva C, Zaniew M, Sikora P, Beck BB, Hoppe B. A report from the European Hyperoxaluria Consortium (OxalEurope) Registry on a large cohort of patients with primary hyperoxaluria type 3. Kidney Int. 2021 Sep;100(3):621-635. doi: 10.1016/j.kint.2021.03.031. Epub 2021 Apr 16. PMID: 33865885.

Epidemiology on Primary Hyperoxaluria type 2
Garrelfs SF, Rumsby G, Peters-Sengers H, Erger F, Groothoff JW, Beck BB, Oosterveld MJS, Pelle A, Neuhaus T, Adams B, Cochat P, Salido E, Lipkin GW, Hoppe B, Hulton SA; OxalEurope Consortium. Patients with primary hyperoxaluria type 2 have significant morbidity and require careful follow-up. Kidney Int. 2019 Dec;96(6):1389-1399. doi: 10.1016/j.kint.2019.08.018. Epub 2019 Sep 3. PMID: 31685312.

Ocular alterations in Primary Hyperoxaluria type 1
Birtel J, Charbel Issa P, Herrmann P, Hoppe B, Büscher AK. Examination of the eye and retinal alterations in primary hyperoxaluria type 1. Nephrol Dial Transplant. 2020 Jun 24:gfaa101. doi: 10.1093/ndt/gfaa101. Epub ahead of print. PMID: 32582926.
Birtel J, Herrmann P, Garrelfs SF, Dulz S, Atiskova Y, Diederen RM, Gliem M, Brinkert F, Holz FG, Boon CJF, Hoppe B, Charbel Issa P. The Ocular Phenotype in Primary Hyperoxaluria Type 1. Am J Ophthalmol. 2019 Oct;206:184-191. doi: 10.1016/j.ajo.2019.04.036. Epub 2019 May 10. PMID: 31078535.

Genotype-phenotype correlations in Primary Hyperoxaluria type 1
Mandrile G, van Woerden CS, Berchialla P, Beck BB, Acquaviva Bourdain C, Hulton SA, Rumsby G; OxalEurope Consortium. Data from a large European study indicate that the outcome of primary hyperoxaluria type 1 correlates with the AGXT mutation type. Kidney Int. 2014 Dec;86(6):1197-204. doi: 10.1038/ki.2014.222. Epub 2014 Jul 2. PMID: 24988064.

Guidance for diagnosis and treatment
Cochat P, Hulton SA, Acquaviva C, Danpure CJ, Daudon M, De Marchi M, Fargue S, Groothoff J, Harambat J, Hoppe B, Jamieson NV, Kemper MJ, Mandrile G, Marangella M, Picca S, Rumsby G, Salido E, Straub M, van Woerden CS; OxalEurope. Primary hyperoxaluria Type 1: indications for screening and guidance for diagnosis and treatment. Nephrol Dial Transplant. 2012 May;27(5):1729-36. doi: 10.1093/ndt/gfs078. PMID: 22547750.