World CDG Statement on COVID-19 Outbreak

WHAT DO WE KNOW?

Congenital disorders of glycosylation (CDG) are a family of complex metabolic diseases. Known CDG population is mostly pediatric. COVID-19 is a newly identified virus causing flu-like and respiratory infection (and, in severe cases pneumonia) symptoms. Less frequently, gastrointestinal manifestations (e.g. diarrhea) may occur. Although data is still scarce, some vulnerable (“high risk”) populations have been identified, namely: older adults, patients with lung, heart conditions and/or diabetes.

A very recent update from the Centres for Disease Control (CDC) has stated that NEUROLOGIC DISEASES and NEURODEVELOPMENTAL CONDITIONS may have an increased risk of having serious COVID-19 infection-related manifestations.

Source: worldcdg.org

STATEMENT ON COVID-19

Updated on 19th of March 2020

This is a GLOBAL recommendation.
COVID-19 outbreak prevalence and response measures vary across countries.

STATEMENT ENDORSED BY:

Dr. Eva Morava
Mayo Clinic
Rochester, USA

Dr. Rita Barone
University Hospital of Catania
Catania, Italy

Dr. Mercedes Serrano
Hospital Sant Joan de Dèu
Barcelona, Spain

Dr. Jaak Jaeken
University Hospitals Leuven
Leuven, Belgium

Dr. David Coman
Australia

Dr. Ruqaiah Altassan
Saudi Arabia

Dr. Laia Alsina
Hospital Sant Joan de Dèu, Barcelona
Spain

Dr. Andrew Edmonson
Children’s Hospital of Philadelphia
USA

Dr. Christima Lam
University of Washington and Seattle Children’s Hospital
USA

Dr. Stephanie Grunewald
United Kingdom

Dr. Erik Eklund
Skane University Hospital and Lund University
Lund, Sweden

Dr. Mari-Anne Vals
Tartu University Hospital Children’s Clinic
Tartu, Estonia

Dr. Jolanta Sykut-Cegielska
The Institute of Mother and Child
Poland

Dr. Bradley S. Miller
University of Minnesota Masonic Children’s Hospital
USA


Organisations

Research networks

Frontiers in CDG Consortia (FCDGC)

CDG & Allies – Professionals and Patient associations International Network (CDG&Allies-PPAIN)

MetabERN – European Reference Network for Rare Metabolic Diseases

Mayo Clinc

National Institute of Children´s Diseases (Národný Ústav Detských Chorôb), Bratislava, Slovakia

Patient associations

The Portuguese Association for CDG (APCDG)

CDG CARE

CDG UK

CDG Italia

CDG The Netherlands (VKS)

Asociación Española CDG (AESCDG)

Les P’tits CDG

Amour Fund  (USA)