The aim of the study is to determine the state of sexual development in patients with inherited epidermolysis bullosa; the study is planned to include boys and girls aged 8 to 18 years with a diagnosis of epidermolysis bullosa simplex, junctional epidermolysis bullosa, Kindler syndrome.
Age range
8 Years – 18 Years
Sex
ALL
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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.
Assessment of the state of sexual development of children with various types of inherited epidermolysis bullosa using the Tanner scale
Timeframe: 1 day
Determination of the state of functional activity of the sex glands in children with various types of inherited epidermplysis bullosa by the method of biochemical study of the level of sex hormones
Timeframe: 1 day
Determination of additional hormonal indicators
Timeframe: 1 day
Functional development and morphometric parameters of the genital glands in children with various types of inherited epidermolysis bullosa by ultrasound diagnostics
Timeframe: 1 day
The state of bone age in children with various types of inherited epidermolysis bullosa using X-ray examination of the hands
Timeframe: 1 day
Determination of the psychological state of children with various types of inherited epidermolysis bullosa using the Pearce-Harris scale
Timeframe: 1 day
Determination of the psychological state of children with various types of inherited epidermolysis bullosa using the personality drawing technique of K. Machover
Timeframe: 1 day
Determination of the psychological state of children with various types of inherited epidermolysis bullosa using the T. Aachenbach questionnaire
Timeframe: 1 day
Determination of the level of intellectual development in children with various types of inherited epidermolysis bullosa using D. Wexler's test
Timeframe: 1 day
Determination of the severity of the course of the disease in children with various types of inherited epidermolysis bullosa using EBDASI
Timeframe: 1 day