Impact of COVID-19 infection in patients with inherited metabolic diseases: a National Multicenter Study from the French IMDs Healthcare Network for Rare Diseases

The COVID-19 pandemic presented unique challenges for patients with inherited metabolic diseases (IMDs), particularly due to the risk of infection-related metabolic decompensation and disruptions to specialized care. We aimed to assess the impact of COVID-19 infection on the clinical course of patients with IMDs in a National Multicenter Study from the French IMDs Healthcare Network for Rare Diseases. This national French study included 317 IMD patients (69 children and 248 adults) with symptomatic or asymptomatic COVID-19 infection between January 2020 and January 2023. Most COVID-19 cases were mild to moderate. The frequency of symptomatic COVID-19 was similar in adults and children (234/248 [94.3%] vs. 56/64 [87.5%], p = 0.09). Children experienced more frequently metabolic destabilization than adults during a COVID-19 infection (17/67 [25.4%] vs. 33/248 [13.3%], p = 0.03). Moreover, the proportion of children admitted to the ICU was higher than that of adult patients (5/69 [7.2%] vs. 4/248 [1.6%], p = 0.04). Temporary suspension or delay of IMD-specific treatment due to COVID-19 was rare, affecting 3/64 (4.7%) children and 13/229 (5.7%) adults. Severe COVID-19 outcomes were uncommon, with only one death in the adult cohort and five cases of long-term sequelae (1 child, 4 adults). COVID-19 was generally mild to moderate in IMD patients and caused metabolic decompensation or imbalance in a minority of cases, with only rare interruptions to disease-specific treatment. We observed that COVID-19 more frequently worsened the condition of children with IMD compared to adults in our cohort of patients.

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Journal
Orphanet Journal of Rare Diseases
Published
2026-02-14
DOI
https://doi.org/10.1186/s13023-026-04230-8
Primary Topic
Genomics and Rare Diseases
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article
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article

Impact of COVID-19 infection in patients with inherited metabolic diseases: a National Multicenter Study from the French IMDs Healthcare Network for Rare Diseases

Aurélia Poujois, N. Belmatoug, Karine Mention, Isabelle Redonnet-Vernhet et al.
Orphanet Journal of Rare Diseases
Genomics and Rare Diseases
article

Impact of COVID-19 infection in patients with inherited metabolic diseases: a National Multicenter Study from the French IMDs Healthcare Network for Rare Diseases

Aurélia Poujois, N. Belmatoug, Karine Mention, Isabelle Redonnet-Vernhet, Myriam Dao, V. Leguy‐Seguin, Christian Lavigne, B. Héron, Dominique P. Germain, P. De Lonlay, Wladimir Mauhin, Anaïs Brassier, O. Lidove, Philippe A. Labrune, Claire Douillard, Dalila Habes, François Maillot, Karin Mazodier, Magali Gorce, Aline Cano, Azza Khemiri, Marc G. Berger, Anne-Sophie Guemann, Marie-Thérèse Abi-Warde, Camille Wicker
article en

Abstract

The COVID-19 pandemic presented unique challenges for patients with inherited metabolic diseases (IMDs), particularly due to the risk of infection-related metabolic decompensation and disruptions to specialized care. We aimed to assess the impact of COVID-19 infection on the clinical course of patients with IMDs in a National Multicenter Study from the French IMDs Healthcare Network for Rare Diseases. This national French study included 317 IMD patients (69 children and 248 adults) with symptomatic or asymptomatic COVID-19 infection between January 2020 and January 2023. Most COVID-19 cases were mild to moderate. The frequency of symptomatic COVID-19 was similar in adults and children (234/248 [94.3%] vs. 56/64 [87.5%], p = 0.09). Children experienced more frequently metabolic destabilization than adults during a COVID-19 infection (17/67 [25.4%] vs. 33/248 [13.3%], p = 0.03). Moreover, the proportion of children admitted to the ICU was higher than that of adult patients (5/69 [7.2%] vs. 4/248 [1.6%], p = 0.04). Temporary suspension or delay of IMD-specific treatment due to COVID-19 was rare, affecting 3/64 (4.7%) children and 13/229 (5.7%) adults. Severe COVID-19 outcomes were uncommon, with only one death in the adult cohort and five cases of long-term sequelae (1 child, 4 adults). COVID-19 was generally mild to moderate in IMD patients and caused metabolic decompensation or imbalance in a minority of cases, with only rare interruptions to disease-specific treatment. We observed that COVID-19 more frequently worsened the condition of children with IMD compared to adults in our cohort of patients.

Orphanet Journal of Rare DiseasesVol. 21(1)
Hôpital Necker-Enfants Malades (FR), Inserm (FR), Université Paris Cité (FR), Hôpital Beaujon (FR), Centre Hospitalier Universitaire de Bordeaux (FR), Centre Hospitalier Universitaire de Lille (FR), Centre Hospitalier Universitaire de Toulouse (FR), Sorbonne Université (FR), Institut Necker Enfants Malades (FR), Hôpital Armand-Trousseau (FR), Centre Hospitalier Universitaire de Tours (FR), Assistance Publique – Hôpitaux de Paris (FR), Hôpital Bretonneau (FR), Laboratoire National de Référence (MA), Centre Hospitalier Universitaire d'Angers (FR), Groupe Hospitalier Diaconesses Croix Saint-Simon (FR), CHU Dijon Bourgogne (FR), Hôpitaux Universitaires Paris-Ouest (FR), Fondation Ophtalmologique Adolphe de Rothschild (FR), Centre Hospitalier Universitaire de Clermont-Ferrand (FR), Hôpital Raymond-Poincaré (FR), Hôpitaux Universitaires de Strasbourg (FR), Hôpital Antoine-Béclère (FR), Institut Alfred Fournier (FR), Hôpital de la Timone (FR), Bicêtre Hospital (FR), Bombardier (Canada) (CA)
Good health and well-being
Openalex Percentile: Top 53%
Genomics and Rare Diseases
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