What’s it like to live with untreated fabry disease? a new study aims to find out
NCT ID NCT07560956
First seen May 08, 2026 · Last updated Jun 22, 2026 · Updated 10 times
Summary
This study will interview 35 adults in Sweden who have Fabry disease but are not yet receiving treatment. The goal is to learn how they experience their quality of life, daily activities, and healthcare support. By listening to patients' own stories, researchers hope to identify unmet needs and improve care for people living with this rare condition.
Disclaimer
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This is a summary of
the original study
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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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Sahlgrenska University Hospital
Gothenburg, 413 45, Sweden
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this study could help doctors better understand the needs of people with Fabry disease who are not yet on treatment, leading to more supportive care.
What could go wrong
This is a small, early-stage interview study with only 35 participants in Sweden, so findings may not apply to all patients. It does not test any treatment.
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.