Improved Outcome of Infantile Oxalosis Over Time in Europe: Data From the OxalEurope Registry.

children end-stage kidney disease infant infantile oxalosis primary hyperoxaluria

Journal

Kidney international reports
ISSN: 2468-0249
Titre abrégé: Kidney Int Rep
Pays: United States
ID NLM: 101684752

Informations de publication

Date de publication:
Jul 2022
Historique:
received: 26 01 2022
revised: 05 04 2022
accepted: 11 04 2022
entrez: 11 7 2022
pubmed: 12 7 2022
medline: 12 7 2022
Statut: epublish

Résumé

Infantile oxalosis is the most severe form of primary hyperoxaluria type 1 (PH1), with onset of end-stage kidney disease (ESKD) during infancy A retrospective registry study was conducted using data from the OxalEurope registry. All PH1 patients with ESKD onset at age <1 year were analyzed. We identified 95 patients born between 1980 and 2018 with infantile oxalosis. Median (interquartile range [IQR]) age at ESKD was 0.4 (0.3-0.5) year. There were 4 patients diagnosed by family screening who developed ESKD despite early diagnosis. There were 11 patients who had biallelic missense mutations associated with vitamin B6 responsiveness. Of 89 patients, 27 (30%) died at a median age of 1.4 (0.6-2.0) years (5-year patient survival of 69%). Systemic oxalosis was described in 54 of 56 screened patients (96%). First transplantation was performed at a median age of 1.7 (1.3-2.9) years. In 42 cases, this procedure was a combined liver-kidney transplantation (LKTx), and in 23 cases, liver transplantations (LTx) was part of a sequential procedure. Survival rates of both strategies were similar. Patient survival was significantly higher in patients born after 2000. Intrafamilial phenotypic variability was present in 14 families of patients with infantile oxalosis. Nearly all screened patients with infantile oxalosis developed systemic disease. Mortality is still high but has significantly improved over time and might further improve under new therapies. The intrafamilial phenotypic variability warrants further investigation.

Identifiants

pubmed: 35812297
doi: 10.1016/j.ekir.2022.04.012
pii: S2468-0249(22)01289-X
pmc: PMC9263236
doi:

Types de publication

Journal Article

Langues

eng

Pagination

1608-1618

Informations de copyright

© 2022 International Society of Nephrology. Published by Elsevier Inc.

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Auteurs

Lisa J Deesker (LJ)

Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Sander F Garrelfs (SF)

Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Giorgia Mandrile (G)

Medical Genetics Unit, San Luigi University Hospital, University of Torino, Orbassano (TO), Italy.
Thalassemia Center, San Luigi University Hospital, University of Torino, Orbassano (TO), Italy.

Michiel J S Oosterveld (MJS)

Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Pierre Cochat (P)

Department of Pediatric Nephrology, Hospices Civils de Lyon and University de Lyon, Lyon, France.

Georges Deschênes (G)

Department of Pediatric Nephrology, Paris University Hospital Robert Debré, Paris, France.

Jérôme Harambat (J)

Department of Pediatrics, Pediatric Nephrology Unit, Bordeaux University Hospital, Bordeaux, France.

Sally-Anne Hulton (SA)

Department of Nephrology, Birmingham Women's and Children's NHS Foundation Trust, Birmingham, UK.

Asheeta Gupta (A)

Department of Nephrology, Birmingham Women's and Children's NHS Foundation Trust, Birmingham, UK.

Bernd Hoppe (B)

Department of Pediatric Nephrology, Children's Hospital of the University of Bonn, Bonn, Germany.

Bodo B Beck (BB)

Institute of Human Genetics, Center for Molecular Medicine Cologne, University Hospital of Cologne, Cologne, Germany.
Center for Rare and hereditary Kidney Disease, Cologne, University Hospital of Cologne, Cologne, Germany.

Laure Collard (L)

Pediatric Nephrology unit, Department of Pediatrics, Centre Hospitalier Universitaire de Liège, Liège, Belgium.

Rezan Topaloglu (R)

Department of Pediatric Nephrology, Hacettepe University School of Medicine, Ankara, Turkey.

Larisa Prikhodina (L)

Department of Inherited and Acquired Kidney Diseases, Research and Clinical Institute for Pediatrics, Pirogov Russian National Research Medical University, Moscow, Russia.

Eduardo Salido (E)

Department of Pathology, Centre for Biomedical Research on Rare Diseases, Hospital Universitario Canarias, Universidad La Laguna, Tenerife, Spain.

Thomas Neuhaus (T)

Department of Pediatrics, Children's Hospital Lucerne, Lucerne, Switzerland.

Jaap W Groothoff (JW)

Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Justine Bacchetta (J)

Department of Pediatric Nephrology, Hospices Civils de Lyon and University de Lyon, Lyon, France.

Classifications MeSH