International consensus guidelines for phosphoglucomutase 1 deficiency (PGM1-CDG): Diagnosis, follow-up, and management.


Journal

Journal of inherited metabolic disease
ISSN: 1573-2665
Titre abrégé: J Inherit Metab Dis
Pays: United States
ID NLM: 7910918

Informations de publication

Date de publication:
01 2021
Historique:
received: 20 04 2020
revised: 07 07 2020
accepted: 14 07 2020
pubmed: 19 7 2020
medline: 24 12 2021
entrez: 19 7 2020
Statut: ppublish

Résumé

Phosphoglucomutase 1 (PGM1) deficiency is a rare genetic disorder that affects glycogen metabolism, glycolysis, and protein glycosylation. Previously known as GSD XIV, it was recently reclassified as a congenital disorder of glycosylation, PGM1-CDG. PGM1-CDG usually manifests as a multisystem disease. Most patients present as infants with cleft palate, liver function abnormalities and hypoglycemia, but some patients present in adulthood with isolated muscle involvement. Some patients develop life-threatening cardiomyopathy. Unlike most other CDG, PGM1-CDG has an effective treatment option, d-galactose, which has been shown to improve many of the patients' symptoms. Therefore, early diagnosis and initiation of treatment for PGM1-CDG patients are crucial decisions. In this article, our group of international experts suggests diagnostic, follow-up, and management guidelines for PGM1-CDG. These guidelines are based on the best available evidence-based data and experts' opinions aiming to provide a practical resource for health care providers to facilitate successful diagnosis and optimal management of PGM1-CDG patients.

Identifiants

pubmed: 32681750
doi: 10.1002/jimd.12286
pmc: PMC7855268
mid: NIHMS1636831
doi:

Substances chimiques

Galactose X2RN3Q8DNE

Types de publication

Journal Article Practice Guideline Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

148-163

Subventions

Organisme : NINDS NIH HHS
ID : U54 NS115198
Pays : United States

Informations de copyright

© 2020 SSIEM.

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Auteurs

Ruqaiah Altassan (R)

Department of Medical Genetics, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
College of Medicine, Alfaisal University, Riyadh, Saudi Arabia.

Silvia Radenkovic (S)

Metabolomics Expertise Center, Center for Cancer Biology, VIB, Leuven, Belgium.
Metabolomics Expertise Center, Department of Oncology, KU Leuven, Leuven, Belgium.
Laboratory of Hepatology, Department CHROMETA, KU Leuven, Leuven, Belgium.
Department of Clinical Genomics and Laboratory of Medical Pathology, Mayo Clinic, Rochester, Minnesota, USA.

Andrew C Edmondson (AC)

Department of Pediatrics, Division of Human Genetics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Rita Barone (R)

Child Neurology and Psychiatry Unit, Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy.

Sandra Brasil (S)

Portuguese Association for Congenital Disorders of Glycosylation (CDG), Lisbon, Portugal.
UCIBIO, Departamento Ciências da Vida, Faculdade de Ciências e Tecnologia, Universidade NOVA de Lisboa, Caparica, Lisbon, Portugal.
Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Lisbon, Portugal.

Anna Cechova (A)

Department of Paediatrics and Adolescent Medicine, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic.

David Coman (D)

Metabolic Medicine, Queensland Children's Hospital, Brisbane, Australia.

Sarah Donoghue (S)

Department of Metabolic Medicine, The Royal Children's Hospital, Melbourne, Victoria, Australia.

Kristina Falkenstein (K)

Center for Child and Adolescent Medicine, Department, University of Heidelberg, Heidelberg, Germany.

Vanessa Ferreira (V)

Portuguese Association for Congenital Disorders of Glycosylation (CDG), Lisbon, Portugal.

Carlos Ferreira (C)

National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.

Agata Fiumara (A)

Child Neurology and Psychiatry Unit, Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy.

Rita Francisco (R)

Portuguese Association for Congenital Disorders of Glycosylation (CDG), Lisbon, Portugal.
UCIBIO, Departamento Ciências da Vida, Faculdade de Ciências e Tecnologia, Universidade NOVA de Lisboa, Caparica, Lisbon, Portugal.
Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Lisbon, Portugal.

Hudson Freeze (H)

Sanford Children's Health Research Center, Sanford-Burnham-Prebys Medical Discovery Institute, La Jolla, California, USA.

Stephanie Grunewald (S)

Metabolic Department, Great Ormond Street Hospital NHS Foundation Trust and Institute for Child Health, NIHR Biomedical Research Center (BRC), University College London, London, UK.

Tomas Honzik (T)

Department of Paediatrics and Adolescent Medicine, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic.

Jaak Jaeken (J)

Center for Metabolic Diseases, KU Leuven, Leuven, Belgium.

Donna Krasnewich (D)

National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.

Christina Lam (C)

Division of Genetic Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
Center for Integrative Brain Research, Seattle Children's Research Institute, Seattle, Washington, USA.

Joy Lee (J)

Department of Metabolic Medicine, The Royal Children's Hospital, Melbourne, Victoria, Australia.

Dirk Lefeber (D)

Department of Human Genetics, Radboud University Medical Center, Nijmegen, Netherlands.

Dorinda Marques-da-Silva (D)

Portuguese Association for Congenital Disorders of Glycosylation (CDG), Lisbon, Portugal.
UCIBIO, Departamento Ciências da Vida, Faculdade de Ciências e Tecnologia, Universidade NOVA de Lisboa, Caparica, Lisbon, Portugal.
Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Lisbon, Portugal.

Carlota Pascoal (C)

Portuguese Association for Congenital Disorders of Glycosylation (CDG), Lisbon, Portugal.
UCIBIO, Departamento Ciências da Vida, Faculdade de Ciências e Tecnologia, Universidade NOVA de Lisboa, Caparica, Lisbon, Portugal.
Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Lisbon, Portugal.

Dulce Quelhas (D)

Centro de Genética Médica Doutor Jacinto Magalhães, Unidade de Bioquímica Genética, Porto, Portugal.

Kimiyo M Raymond (KM)

Biochemical Genetics Laboratory, Department of Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA.

Daisy Rymen (D)

Department of Paediatrics and Metabolic Center, University Hospitals Leuven, Leuven, Belgium.

Malgorzata Seroczynska (M)

Department of Inborn Errors of Metabolism and Paediatrics, the Institute of Mother and Child, Warsaw, Poland.

Mercedes Serrano (M)

Neurology Department, Hospital Sant Joan de Déu, U-703 Centre for Biomedical Research on Rare Diseases (CIBER-ER), Instituto de Salud Carlos III, Barcelona, Spain.

Jolanta Sykut-Cegielska (J)

Department of Inborn Errors of Metabolism and Paediatrics, the Institute of Mother and Child, Warsaw, Poland.

Christian Thiel (C)

Center for Child and Adolescent Medicine, Department, University of Heidelberg, Heidelberg, Germany.

Frederic Tort (F)

Section of Inborn Errors of Metabolism, Department of Biochemistry and Molecular Genetics, Hospital Clínic, IDIBAPS, CIBERER, Barcelona, Spain.

Mari-Anne Vals (MA)

Department of Clinical Genetics, Institute of Clinical Medicine, University of Tartu, Tartu, Estonia.

Paula Videira (P)

UCIBIO, Departamento Ciências da Vida, Faculdade de Ciências e Tecnologia, Universidade NOVA de Lisboa, Caparica, Lisbon, Portugal.
Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Lisbon, Portugal.

Nicol Voermans (N)

Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.

Peter Witters (P)

Department of Paediatrics and Metabolic Center, University Hospitals Leuven, Leuven, Belgium.
Department of Development and Regeneration, KU Leuven, Leuven, Belgium.

Eva Morava (E)

Department of Clinical Genomics and Laboratory of Medical Pathology, Mayo Clinic, Rochester, Minnesota, USA.

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