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A Long-Term Observational Study of Patients With Fucosidosis

StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Primary endpoints: details revised at 1 of 1 entry
    • Eligibility criteria expanded, about 10 words
    • Site details revised at 7 of 16 sites
  2. Eligibility criteria expanded, about 45 wordsv2
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
The purpose of this observational research study is to learn more about the natural history of fucosidosis, its symptoms, and how it develops over time. This study intends to collect information from participants diagnosed with fucosidosis; however, this study does not include any medication or treatment other than the usual medical care provided to study participants. The information collected in this study will be used to help understand the disease characteristics of fucosidosis; with this information potentially being able to help design future studies and treatments for this disease. There is currently no approved treatment for patients with fucosidosis. The study consists of 2 parts: a) Part A - retrospective data collection, and b) Part B - prospective data collection.
Trial Details
NCT Number NCT07615400
Lead Sponsor JCR Pharmaceuticals Co., Ltd.
Conditions
(from sponsor)		 Fucosidosis
Related terms Brain Diseases, Metabolic, Inborn, Carbohydrate Metabolism, Inborn Errors, Congenital, Hereditary, and Neonatal Diseases and Abnormalities, Fucosidosis, Genetic Diseases, Inborn, Lysosomal Storage Diseases, Lysosomal Storage Diseases, Nervous System, Metabolism, Inborn Errors
Enrollment 57 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov