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Research activity and capability in the European reference network MetabERN.
Orphanet J Rare Dis. 2019 May 29;14(1):119. doi: 10.1186/s13023-019-1091-8.
Orphanet J Rare Dis. 2019.
PMID: 31142374
Free PMC article.
A generic emergency protocol for patients with inborn errors of metabolism causing fasting intolerance: A retrospective, single-center study and the generation of www.emergencyprotocol.net.
Rossi A, Hoogeveen IJ, Lubout CMA, de Boer F, Fokkert-Wilts MJ, Rodenburg IL, van Dam E, Grünert SC, Martinelli D, Scarpa M; CONNECT MetabERN Collaboration Group; Dekker H, Te Boekhorst ST, van Spronsen FJ, Derks TGJ.
Rossi A, et al.
J Inherit Metab Dis. 2021 Sep;44(5):1124-1135. doi: 10.1002/jimd.12386. Epub 2021 May 4.
J Inherit Metab Dis. 2021.
PMID: 33844307
Free PMC article.
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The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys.
Lampe C, Dionisi-Vici C, Bellettato CM, Paneghetti L, van Lingen C, Bond S, Brown C, Finglas A, Francisco R, Sestini S, Heard JM, Scarpa M; MetabERN collaboration group.
Lampe C, et al.
Orphanet J Rare Dis. 2020 Dec 3;15(1):341. doi: 10.1186/s13023-020-01619-x.
Orphanet J Rare Dis. 2020.
PMID: 33272301
Free PMC article.
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Availability, accessibility and delivery to patients of the 28 orphan medicines approved by the European Medicine Agency for hereditary metabolic diseases in the MetabERN network.
Heard JM, Vrinten C, Schlander M, Bellettato CM, van Lingen C, Scarpa M; MetabERN collaboration group.
Heard JM, et al.
Orphanet J Rare Dis. 2020 Jan 6;15(1):3. doi: 10.1186/s13023-019-1280-5.
Orphanet J Rare Dis. 2020.
PMID: 31907071
Free PMC article.
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