Galactokinase deficiency: lessons from the GalNet registry.

GALK1 gene variants; neonatal complications cataract; galactosemias registry galactokinase 1 deficiency

Journal

Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831

Informations de publication

Date de publication:
01 2021
Historique:
received: 01 05 2020
accepted: 04 08 2020
revised: 31 07 2020
pubmed: 19 8 2020
medline: 4 6 2021
entrez: 19 8 2020
Statut: ppublish

Résumé

Galactokinase (GALK1) deficiency is a rare hereditary galactose metabolism disorder. Beyond cataract, the phenotypic spectrum is questionable. Data from affected patients included in the Galactosemias Network registry were collected to better characterize the phenotype. Observational study collecting medical data of 53 not previously reported GALK1 deficient patients from 17 centers in 11 countries from December 2014 to April 2020. Neonatal or childhood cataract was reported in 15 and 4 patients respectively. The occurrence of neonatal hypoglycemia and infection were comparable with the general population, whereas bleeding diathesis (8.1% versus 2.17-5.9%) and encephalopathy (3.9% versus 0.3%) were reported more often. Elevated transaminases were seen in 25.5%. Cognitive delay was reported in 5 patients. Urinary galactitol was elevated in all patients at diagnosis; five showed unexpected Gal-1-P increase. Most patients showed enzyme activities ≤1%. Eleven different genotypes were described, including six unpublished variants. The majority was homozygous for NM_000154.1:c.82C>A (p.Pro28Thr). Thirty-five patients were diagnosed following newborn screening, which was clearly beneficial. The phenotype of GALK1 deficiency may include neonatal elevation of transaminases, bleeding diathesis, and encephalopathy in addition to cataract. Potential complications beyond the neonatal period are not systematically surveyed and a better delineation is needed.

Identifiants

pubmed: 32807972
doi: 10.1038/s41436-020-00942-9
pii: S1098-3600(21)02501-6
pmc: PMC7790741
doi:

Substances chimiques

GALK1 protein, human EC 2.7.1.6
Galactokinase EC 2.7.1.6

Types de publication

Journal Article Observational Study Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

202-210

Références

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Auteurs

M Estela Rubio-Gozalbo (ME)

Department of Pediatrics and Clinical Genetics, GROW-School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands. estela.rubio@mumc.nl.

Britt Derks (B)

Department of Pediatrics and Clinical Genetics, GROW-School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands.

Anibh Martin Das (AM)

Clinic for Paediatric Kidney-, Liver- and Metabolic Diseases, Hannover, Germany.

Uta Meyer (U)

Clinic for Paediatric Kidney-, Liver- and Metabolic Diseases, Hannover, Germany.

Dorothea Möslinger (D)

Department for Pediatrics and Adolescent Medicine, Inborn Errors of Metabolism, Medical University of Vienna, Vienna, Austria.

M Luz Couce (ML)

Unit of Diagnosis and Treatment of Congenital Metabolic Diseases, S. Neonatology, Department of Pediatrics, University and Hospital Clínico Universitario de Santiago de Compostela, CIBERER, Health Research Institute of Santiago de Compostela (IDIS), MetabERN: European Reference Network for Rare Hereditary Metabolic Disorders, Santiago de Compostela, Spain.

Aurélie Empain (A)

Department of Pediatrics, Queen Fabiola Children's University Hospital, Metabolic Centre ULB-VUB, Brussels, Belgium.

Can Ficicioglu (C)

Department of Metabolic Disease Program, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Natalia Juliá Palacios (N)

Metabolic Unit. Departments of Neurology and Gastroenterology-Nutrition. IPR (Institut Pediàtric de Recerca), CIBERER and MetabERN. Hospital Sant Joan de Déu, Barcelona, Spain.

Mariela M De Los Santos De Pelegrin (MM)

Metabolic Unit. Departments of Neurology and Gastroenterology-Nutrition. IPR (Institut Pediàtric de Recerca), CIBERER and MetabERN. Hospital Sant Joan de Déu, Barcelona, Spain.

Isabel A Rivera (IA)

Research Institute for Medicines (iMed.ULisboa), and Department of Biochemistry and Human Biology, Faculty of Pharmacy, Universidade de Lisboa, Lisbon, Portugal.

Sabine Scholl-Bürgi (S)

Department of Pediatrics, Medical University of Innsbruck, Innsbruck, Austria.

Annet M Bosch (AM)

Amsterdam UMC, University of Amsterdam, Pediatric Metabolic Diseases, Emma Children's Hospital, Amsterdam, Netherlands.

David Cassiman (D)

Metabolic Center, Department of Gastroenterology-Hepatology, Leuven University Hospitals and KU Leuven, Leuven, Belgium.

Didem Demirbas (D)

Manton Center for Orphan Disease Research, Division of Genetics and Genomics, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.

Matthias Gautschi (M)

Department of Pediatrics and Institute of Clinical Chemistry, Inselspital, University Hospital Bern, Bern, Switzerland.

Ina Knerr (I)

National Centre for Inherited Metabolic Disorders, Temple Street Children's University Hospital, Dublin, Ireland.

Philippe Labrune (P)

APHP, HUPS, Hôpital Antoine Béclère, Centre de Référence Maladies Héréditaires Hépatiques, Clamart, France.
Université Paris Sud-Paris Saclay, and INSERM U, Paris, France.

Anastasia Skouma (A)

Institute of Child Health, Institouto Ygeias Paidiou (ICH), Thivon 1 & Papadiamantopoulou, Athens, Greece.

Patrick Verloo (P)

Division of Child Neurology and Metabolism, Department of Pediatrics, Ghent University Hospital, Ghent, Belgium.

Saskia B Wortmann (SB)

University Children's Hospital, Parcelsus Medical University (PMU), Salzburg, Austria.
Radboud Center for Mitochondrial Medicine, Department of Pediatrics, Amalia Children's Hospital, Radboudumc, Nijmegen, The Netherlands.

Eileen P Treacy (EP)

National Centre for Inherited Metabolic Disorders-Adult Services, Mater Misericordiae University Hospital, Dublin, Ireland.

David J Timson (DJ)

School of Pharmacy and Biomolecular Sciences, University of Brighton, Brighton, UK.

Gerard T Berry (GT)

Manton Center for Orphan Disease Research, Division of Genetics and Genomics, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.

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