Study reveals hidden time costs of fabry disease infusions
NCT ID NCT04281537
First seen Feb 05, 2026 · Last updated May 23, 2026 · Updated 15 times
Summary
This study looked at how much time and money it takes for Fabry disease patients and their caregivers to receive enzyme replacement therapy. Researchers watched 82 adults during their regular infusions to measure the work for healthcare providers and the impact on patients' daily lives. The goal was to understand the full burden of treatment, including quality of life and work productivity, to help improve care.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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Amicus Therapeutics, Inc.
Philadelphia, Pennsylvania, 19104, United States
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Dokuz Eylul University Medical Faculty
Izmir, Turkey (Türkiye)
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Ege University Hospital
Izmir, Turkey (Türkiye)
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Gazi University Hospital
Ankara, Turkey (Türkiye)
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Instituto de Genética e Erros Inatos do Metabolismo (IGEIM)
São Paulo, Brazil
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Keio University Hospital
Tokyo, Japan
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National Taiwan University
Taipei, Taiwan
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Taipei Veterans General Hospital
Taipei, Taiwan
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Yokohama Municipal Citizen's Hospital
Yokohama, Japan
Conditions
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