Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar

<p dir="ltr">Duchenne Muscular Dystrophy is a rare, X-linked neuromuscular disorder that leads to progressive muscle degeneration, loss of ambulation, and premature mortality due to respiratory and cardiac failure. Historically, Duchennke Muscular Dystrophy has been managed through s...

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محفوظ في:
التفاصيل البيبلوغرافية
المؤلف الرئيسي: Mahmoud Fawzi Osman (23770893) (author)
مؤلفون آخرون: Khalid Ibrahim (3853360) (author), Claire Gleeson (23770896) (author), Haytham Ibrahim (21406778) (author), Ikram Ul Haque (23770899) (author), Noora Alhamad (6187880) (author), Tawfeg Ben-Omran (6663634) (author)
منشور في: 2025
الموضوعات:
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author Mahmoud Fawzi Osman (23770893)
author2 Khalid Ibrahim (3853360)
Claire Gleeson (23770896)
Haytham Ibrahim (21406778)
Ikram Ul Haque (23770899)
Noora Alhamad (6187880)
Tawfeg Ben-Omran (6663634)
author2_role author
author
author
author
author
author
author_facet Mahmoud Fawzi Osman (23770893)
Khalid Ibrahim (3853360)
Claire Gleeson (23770896)
Haytham Ibrahim (21406778)
Ikram Ul Haque (23770899)
Noora Alhamad (6187880)
Tawfeg Ben-Omran (6663634)
author_role author
dc.creator.none.fl_str_mv Mahmoud Fawzi Osman (23770893)
Khalid Ibrahim (3853360)
Claire Gleeson (23770896)
Haytham Ibrahim (21406778)
Ikram Ul Haque (23770899)
Noora Alhamad (6187880)
Tawfeg Ben-Omran (6663634)
dc.date.none.fl_str_mv 2025-11-27T09:00:00Z
dc.identifier.none.fl_str_mv 10.1038/s41434-025-00580-3
dc.relation.none.fl_str_mv https://figshare.com/articles/journal_contribution/Real-world_experience_with_gene_therapy_in_Duchenne_muscular_dystrophy_center_readiness_and_patients_safety_report_from_Qatar/32075520
dc.rights.none.fl_str_mv CC BY 4.0
info:eu-repo/semantics/openAccess
dc.subject.none.fl_str_mv Biological sciences
Genetics
Biomedical and clinical sciences
Neurosciences
Paediatrics
Pharmacology and pharmaceutical sciences
Duchenne Muscular Dystrophy (DMD)
Neuromuscular disorder
Gene therapy
Pediatric neurology
Rare diseases
Clinical outcomes
dc.title.none.fl_str_mv Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
dc.type.none.fl_str_mv Text
Journal contribution
info:eu-repo/semantics/publishedVersion
text
contribution to journal
description <p dir="ltr">Duchenne Muscular Dystrophy is a rare, X-linked neuromuscular disorder that leads to progressive muscle degeneration, loss of ambulation, and premature mortality due to respiratory and cardiac failure. Historically, Duchennke Muscular Dystrophy has been managed through supportive and symptomatic treatments, with limited options for disease modification. However, advancements in gene therapy have introduced promising interventions aimed at addressing the underlying dystrophin deficiency. Delandistrogene moxeparvovec (Elevidys) received accelerated approval from the U.S. Food and Drug Administration in June 2023 for ambulatory children aged 4–5 years with a confirmed diagnosis of Duchenne Muscular Dystrophy. This approval represented an advancement, offering a disease-modifying therapy at an early stage when muscle function remains relatively preserved. The Food and Drug Administration expanded its approval in June 2024 to include both ambulatory and non-ambulatory children aged 4 years and older. This study provides a retrospective real-world analysis of eight Duchenne Muscular Dystrophy patients who received Elevidys gene therapy at our center in Qatar. Recognizing the complexities involved in treating older Duchenne Muscular Dystrophy patients, a standardized protocol for pre- and post-infusion care was implemented. Our findings highlight the positive clinical outcomes of gene therapy for Duchenne Muscular Dystrophy patients in Qatar.</p><h2 dir="ltr">Other Information</h2><p dir="ltr">Published in: Gene Therapy<br>License: <a href="https://creativecommons.org/licenses/by/4.0" target="_blank">https://creativecommons.org/licenses/by/4.0</a><br>See article on publisher's website: <a href="https://dx.doi.org/10.1038/s41434-025-00580-3" target="_blank">https://dx.doi.org/10.1038/s41434-025-00580-3</a></p>
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identifier_str_mv 10.1038/s41434-025-00580-3
network_acronym_str Manara2
network_name_str Manara2
oai_identifier_str oai:figshare.com:article/32075520
publishDate 2025
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spelling Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from QatarMahmoud Fawzi Osman (23770893)Khalid Ibrahim (3853360)Claire Gleeson (23770896)Haytham Ibrahim (21406778)Ikram Ul Haque (23770899)Noora Alhamad (6187880)Tawfeg Ben-Omran (6663634)Biological sciencesGeneticsBiomedical and clinical sciencesNeurosciencesPaediatricsPharmacology and pharmaceutical sciencesDuchenne Muscular Dystrophy (DMD)Neuromuscular disorderGene therapyPediatric neurologyRare diseasesClinical outcomes<p dir="ltr">Duchenne Muscular Dystrophy is a rare, X-linked neuromuscular disorder that leads to progressive muscle degeneration, loss of ambulation, and premature mortality due to respiratory and cardiac failure. Historically, Duchennke Muscular Dystrophy has been managed through supportive and symptomatic treatments, with limited options for disease modification. However, advancements in gene therapy have introduced promising interventions aimed at addressing the underlying dystrophin deficiency. Delandistrogene moxeparvovec (Elevidys) received accelerated approval from the U.S. Food and Drug Administration in June 2023 for ambulatory children aged 4–5 years with a confirmed diagnosis of Duchenne Muscular Dystrophy. This approval represented an advancement, offering a disease-modifying therapy at an early stage when muscle function remains relatively preserved. The Food and Drug Administration expanded its approval in June 2024 to include both ambulatory and non-ambulatory children aged 4 years and older. This study provides a retrospective real-world analysis of eight Duchenne Muscular Dystrophy patients who received Elevidys gene therapy at our center in Qatar. Recognizing the complexities involved in treating older Duchenne Muscular Dystrophy patients, a standardized protocol for pre- and post-infusion care was implemented. Our findings highlight the positive clinical outcomes of gene therapy for Duchenne Muscular Dystrophy patients in Qatar.</p><h2 dir="ltr">Other Information</h2><p dir="ltr">Published in: Gene Therapy<br>License: <a href="https://creativecommons.org/licenses/by/4.0" target="_blank">https://creativecommons.org/licenses/by/4.0</a><br>See article on publisher's website: <a href="https://dx.doi.org/10.1038/s41434-025-00580-3" target="_blank">https://dx.doi.org/10.1038/s41434-025-00580-3</a></p>2025-11-27T09:00:00ZTextJournal contributioninfo:eu-repo/semantics/publishedVersiontextcontribution to journal10.1038/s41434-025-00580-3https://figshare.com/articles/journal_contribution/Real-world_experience_with_gene_therapy_in_Duchenne_muscular_dystrophy_center_readiness_and_patients_safety_report_from_Qatar/32075520CC BY 4.0info:eu-repo/semantics/openAccessoai:figshare.com:article/320755202025-11-27T09:00:00Z
spellingShingle Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
Mahmoud Fawzi Osman (23770893)
Biological sciences
Genetics
Biomedical and clinical sciences
Neurosciences
Paediatrics
Pharmacology and pharmaceutical sciences
Duchenne Muscular Dystrophy (DMD)
Neuromuscular disorder
Gene therapy
Pediatric neurology
Rare diseases
Clinical outcomes
status_str publishedVersion
title Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
title_full Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
title_fullStr Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
title_full_unstemmed Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
title_short Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
title_sort Real-world experience with gene therapy in Duchenne muscular dystrophy center readiness and patients safety: report from Qatar
topic Biological sciences
Genetics
Biomedical and clinical sciences
Neurosciences
Paediatrics
Pharmacology and pharmaceutical sciences
Duchenne Muscular Dystrophy (DMD)
Neuromuscular disorder
Gene therapy
Pediatric neurology
Rare diseases
Clinical outcomes