Patients share the hidden struggles of living with a rare skin condition
NCT ID NCT05610306
Summary
This study aimed to understand how congenital ichthyosis, a rare genetic skin disorder, affects the quality of life for adults aged 30 and older. Researchers conducted in-depth interviews with 20 patients to learn about their physical, emotional, and social challenges. The goal was to gather personal experiences to identify gaps in care and find ways to better support patients.
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Contacts and locations
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Locations
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Maastricht University Medical Centre +
Maastricht, 6229HX, Netherlands
Conditions
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