This is an observational, multicentre, international study over a 2-year follow-up period. The aim of this study is to understand how XLHED affects the lives of young male patients and their families over time. By studying the natural course of the disease and its impact, the study could improve the understanding of the challenges faced by these patients and their families.
Age range
0 Years – 11 Years
Sex
MALE
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Age
Timeframe: At inclusion
Ectodysplasin A (EDA) characterization of the mutation (null or hypomorphic)
Timeframe: at inclusion
Mean sweat volume (µL)
Timeframe: at inclusion
Mean sweat volume (µL)
Timeframe: at one year
Mean sweat volume (µL)
Timeframe: at two years
Sweat pore density
Timeframe: at inclusion
Sweat pore density
Timeframe: at one year
Sweat pore density
Timeframe: at two years
Dentition problem (anodontia, hypodontia, oligodentia)
Timeframe: at inclusion
Dentition problem (anodontia, hypodontia, oligodentia)
Timeframe: at one year
Dentition problem (anodontia, hypodontia, oligodentia)
Timeframe: at two years
Dry eyes
Timeframe: at inclusion
Dry skin
Timeframe: at inclusion