Association

About Us

The OxalEurope Association: A Network of Experts in Hyperoxaluria

The OxalEurope Association consists of professionals with expertise in hyperoxaluria, consisting of clinicians (including paediatric and adult nephrologists, urologists, geneticists, pathologist, clinical biochemists) and researchers (cell biologists, biochemists, chemists) in the field of hyperoxaluria. Working together, the Association develops programs that meet the mission of OxalEurope.

Steering committee

It consists of a Steering committee, Research Board and Registry Board.

The steering committee supervises and leads the association. It is elected by the members of OxalEurope for a period of 4 years and can be re-elected for one period.

It consists of:

Dr. Shabbir Moochhala (UK)

Chair

Dr. Sander Garrelfs (The Netherlands)

Treasurer

Dr. Giorgia Mandrile (Italy)

Member

Dr. Cristina Martin Higueras (Spain)

Member

Dr. Barbara Cellini (Italy)

Member

Dr. Justine Bacchetta (France)

Member

Registry Board

The Registry Board is responsible for the construction, data gathering and data analyses of the OxalEurope Registry . They meet at least 4 times per year and reports at least yearly to the general assembly.

Members are elected by the general assembly and currently are:

Dr. Jaap Groothoff

Dr. Shabbir Moochhala

Dr. Giorgia Mandrile

Dr. Cristina Martin Higueras

Dr. Bodo Beck

Research Board

We encourage all clinicians throughout Europe to contribute details of patients with hyperoxaluria to the Registry. It’s easy to do and we can help you. You are very welcome to join the OxalEurope Association (but you don’t have to).

The Research Board is responsible for the promotion and supervision of collaborative studies from the Registry database It reports to the general assembly of the Association.

We are always delighted to hear proposals for using Registry data in collaborative projects. If you would like to suggest a project or collaboration, please get in touch by clicking here.

Members are elected by the general assembly and currently are:

Dr. Barbara Cellini

Dr. Bodo Beck

Dr. Eduardo Salido

Ronald Wanders

Advisory Board

The Advisory Board consists of external professionals and stakeholders in hyperoxaluria. It receives an annual report of the activities and finances of OxalEurope. It meets once a year and reports back to the Steering Committee on its findings and suggestions.

Dr. Shabbir Moochhala

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Dr Moochhala is an adult nephrologist at the Royal Free Hospital in London. He trained in Edinburgh and Newcastle upon Tyne, and has a special interest in renal physiology. His PhD examined pyrophosphate transport physiology in the kidney. He runs the UK's largest metabolic kidney stone clinical service at the Royal Free Hospital, and sees many adult patients with all forms of hyperoxaluria from across the UK and internationally. Shabbir contributes at international level to kidney research and education. He is Principal Investigator for four international clinical trials, and is national chair of the RADAR Hyperoxaluria Rare Disease Group. He founded and is chair of the NHS Rare Disease Collaborative Network in hyperoxaluria, and is setting up a national specialist multidisciplinary team for patients with hyperoxaluria, funded by the National Health Service.

ORCID:https://orcid.org/0000-0002-8941-6883

Publications

Wong K, Pitcher D, Braddon F, Downward L, Steenkamp R, Annear N, Barratt J, Bingham C, Chrysochou C, Coward RJ, Game D, Griffin S, Hall M, Johnson S, Kanigicherla D, Karet Frankl F, Kavanagh D, Kerecuk L, Maher ER, Moochhala S, Pinney J, Sayer JA, Simms R, Sinha S, Srivastava S, Tam FWK, Turner AN, Walsh SB, Waters A, Wilson P, Wong E, Taylor CM, Nitsch D, Saleem M, Bockenhauer D, Bramham K, Gale DP; RaDaR consortium. Effects of rare kidney diseases on kidney failure: a longitudinal analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) cohort. Lancet. 2024 Mar 30;403(10433):1279-1289. doi: 10.1016/S0140-6736(23)02843-X. Epub 2024 Mar 13. PMID: 38492578.

Metry EL, Garrelfs SF, Deesker LJ, Acquaviva C, D'Ambrosio V, Bacchetta J, Beck BB, Cochat P, Collard L, Hogan J, Ferraro PM, Franssen CFM, Harambat J, Hulton SA, Lipkin GW, Mandrile G, Martin-Higueras C, Mohebbi N, Moochhala SH, Neuhaus TJ, Prikhodina L, Salido E, Topaloglu R, Oosterveld MJS, Groothoff JW, Peters-Sengers H. Determinants of Kidney Failure in Primary Hyperoxaluria Type 1: Findings of the European Hyperoxaluria Consortium. Kidney Int Rep. 2023 Aug 4;8(10):2029-2042. doi: 10.1016/j.ekir.2023.07.025. PMID: 37849991; PMCID: PMC10577369.

Groothoff JW, Metry E, Deesker L, Garrelfs S, Acquaviva C, Almardini R, Beck BB, Boyer O, Cerkauskiene R, Ferraro PM, Groen LA, Gupta A, Knebelmann B, Mandrile G, Moochhala S, Prytula A, Putnik J, Rumsby G, Soliman NA, Somani B, Bacchetta J. Clinical practice recommendations for primary hyperoxaluria: an expert consensus statement from ERKNet and OxalEurope. Nat Rev Nephrol. 2023 Mar;19(3):194-211. doi: 10.1038/s41581-022-00661-1. Epub 2023 Jan 5. PMID: 36604599.

Ariceta G, Collard L, Abroug S, Moochhala SH, Gould E, Boussetta A, Ben Hmida M, De S, Hunley TE, Jarraya F, Fraga G, Banos A, Lindner E, Dehmel B, Schalk G. ePHex: a phase 3, double-blind, placebo-controlled, randomized study to evaluate long-term efficacy and safety of Oxalobacter formigenes in patients with primary hyperoxaluria. Pediatr Nephrol. 2023 Feb;38(2):403-415. doi: 10.1007/s00467-022-05591-5. Epub 2022 May 12. PMID: 35552824; PMCID: PMC9763141.

Baum MA, Langman C, Cochat P, Lieske JC, Moochhala SH, Hamamoto S, Satoh H, Mourani C, Ariceta G, Torres A, Wolley M, Belostotsky V, Forbes TA, Groothoff J, Hayes W, Tönshoff B, Takayama T, Rosskamp R, Russell K, Zhou J, Amrite A, Hoppe B; PHYOX2 study investigators. PHYOX2: a pivotal randomized study of nedosiran in primary hyperoxaluria type 1 or 2. Kidney Int. 2023 Jan;103(1):207-217. doi: 10.1016/j.kint.2022.07.025. Epub 2022 Aug 22. PMID: 36007597.

Moochhala SH, Worcester EM, Primary hyperoxaluria: the adult nephrologist's point of view, Clinical Kidney Journal, Volume 15, Issue Supplement_1, May 2022, Pages i29–i32, https://doi.org/10.1093/ckj/sfac068

Dr. Cristina Martín-Higueras, Institute of Biomedical Technology, Univ of La Laguna, Spain

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Dr. Cristina Martin Higueras is a medical doctor and molecular biologist from University of La Laguna (Spain), with special interest in the molecular pathology of rare metabolic diseases. Her PhD set up the basis for substrate reduction therapy in Primary Hyperoxaluria (PH) type 1, being nowadays the most effective therapy for these patients. As a postdoctoral researcher in Universitätsklinikum Bonn (Germany), she evaluated the immunological renal response in PH mouse models, and the natural history of PH type 3 European patients. Currently, she coordinates the Spanish PH patient registry (OxalSpain) and the biochemical procedures for improving diagnosis and follow up of PH patients in Spain, in collaboration with the German Hyperoxaluria Center (Bonn, Germany). Cristina has organized two international PH meetings (Tenerife 2017, and Berlin 2022), and several PH patient meetings, as promoter of PH-Europe and Spanish Patient Advocacy groups (PH-Europe and APHES). Dr. Martin Higueras is the creator of the PHlower, the icon of Primary Hyperoxaluria.

ORCID:https://orcid.org/0000-0003-1139-4642

Publications

https://pubmed.ncbi.nlm.nih.gov/?term=martin-higueras+c&sort=date

Martin-Higueras C, Borghese L, Torres A, Fraga-Bilbao F, Santana-Estupiñán R, Stefanidis CJ, Tory K, Walli A, Gondra L, Kempf C, Gessner M, Habbig S, Eifler L, Schmitt CP, Rüdel B, Bartram MP, Beck BB, Hoppe B. Multicenter Long-Term Real World Data on Treatment With Lumasiran in Patients With Primary Hyperoxaluria Type 1. Kidney Int Rep. 2023 Oct 6;9(1):114-133. doi: 10.1016/j.ekir.2023.10.004. PMID: 38312792; PMCID: PMC10831356.

Hoppe B, Martin-Higueras C. Improving Treatment Options for Primary Hyperoxaluria. Drugs. 2022 Jul;82(10):1077-1094. doi: 10.1007/s40265-022-01735-x. Epub 2022 Jul 2. PMID: 35779234; PMCID: PMC9329168.

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.

Moya-Garzón MD, Martín Higueras C, Peñalver P, Romera M, Fernandes MX, Franco-Montalbán F, Gómez-Vidal JA, Salido E, Díaz-Gavilán M. Salicylic Acid Derivatives Inhibit Oxalate Production in Mouse Hepatocytes with Primary Hyperoxaluria Type 1. J Med Chem. 2018 Aug 23;61(16):7144-7167. doi: 10.1021/acs.jmedchem.8b00399. Epub 2018 Aug 6. PMID: 30028141.

Martin-Higueras C, Luis-Lima S, Salido E. Glycolate Oxidase Is a Safe and Efficient Target for Substrate Reduction Therapy in a Mouse Model of Primary Hyperoxaluria Type I. Mol Ther. 2016 Apr;24(4):719-25. doi: 10.1038/mt.2015.224. Epub 2015 Dec 22. PMID: 26689264; PMCID: PMC4886931.