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Pediatric Congenital Adrenal Hyperplasia Management: Regret and Long-term Outcomes

Recruitingn/aAges 18 Years - 65 YearsFemaleUniversity Hospital, Lille
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In plain words

What the trial is, and whether it could suit you

Congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency is a chronic endocrine disorder, often diagnosed in the neonatal period. Severe forms may lead to genital virilization in afected girls and adrenal crises. Management includes lifelong hormone replacement therapy and, historically, early genital surgery, although recent guidelines recommend delaying non-urgent procedures to preserve patient autonomy.This study hypothesizes that pediatric management, particularly early surgical interventions, may influence long-term satisfaction and the expression of regret in adulthood. We will conduct an observational cross-sectional study including adult patients diagnosed with CAH during childhood. Data will be collected using standardized questionnaires assessing medical regret, quality of life, sexual function, and psychological outcomes, together with clinical characteristics and

Sign in to get the eligibility rules as simple questions to take to your doctor.

๐Ÿ“‹ Eligibility rules (as published)
Inclusion Criteria: * Adult patients aged 18 years or older * Diagnosis of classic congenital adrenal hyperplasia due to 21-hydroxylase deficiency * Followed at Lille University Hospital * Able to understand the study information and complete the questionnaires in French * Having provided written informed consent Exclusion Criteria: * Patients younger than 18 years * Non-classic forms of congenital adrenal hyperplasia * Inability to understand the study information or to complete the questionnaires * Refusal to participate or lack of informed consent * Severe cognitive impairment or psychiatric condition preventing reliable questionnaire completion
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What it tests

  • questionnaire
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Where

1 site
CHU de Lille
Lille, France
๐Ÿค Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible โ€” always decide together with your own doctor.
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