Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study

Orphanet Journal of Rare Diseases

Research

Claude Messiaen¹  Arnaud Sandrin¹  Louis Soussand¹  Anne-Sophie Jannot²  Mathieu Kuchenbuch³  Rima Nabbout⁴ 

[1] Banque Nationale de Données Maladies Rares, DSI-Innovation and Données, APHP, Paris, France;Banque Nationale de Données Maladies Rares, DSI-Innovation and Données, APHP, Paris, France;AP-HP. Centre - Université de Paris Cité, Paris, France;HeKA Centre de Recherche des Cordeliers Inserm, INRIA, Paris, France;Department of Pediatric Neurology, Reference Centre for Rare Epilepsies, Hôpital Necker-Enfants Malades, 149 Rue de Sèvres, 75015, Paris, France;Laboratory of Translational Research for Neurological Disorders, INSERM-MR1163, Imagine Institute, Paris, France;Department of Pediatric Neurology, Reference Centre for Rare Epilepsies, Hôpital Necker-Enfants Malades, 149 Rue de Sèvres, 75015, Paris, France;Laboratory of Translational Research for Neurological Disorders, INSERM-MR1163, Imagine Institute, Paris, France;AP-HP. Centre - Université de Paris Cité, Paris, France;

关键词: Rare diseases;    COVID-19;    Health policy;    National health registry;    National health program;    Telehealth;   

DOI  :  10.1186/s13023-022-02580-7

 received in 2022-05-21, accepted in 2022-11-20,  发布年份 2022

来源: Springer

【 授权许可】

CC BY   
© The Author(s) 2022

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