Pediatric Congenital Adrenal Hyperplasia: Long-Term Outcomes and Feelings of Regret

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This is an observational cross-sectional study of adults aged 18 and over with classic CAH due to 21-hydroxylase deficiency who were treated at Lille. Participants will complete standardized French questionnaires about regret, quality of life, sexual function, and psychological outcomes, along with clinical history and past medical/surgical treatment. The goal is to describe how pediatric management, including early genital surgery when applicable, relates to adults’ perceptions and well-being. Data will be analyzed to identify associations between past interventions and current patient-reported outcomes. The primary outcome is the prevalence of regret related to pediatric management decisions.

Why it matters

Who can join: the full rules

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

Where it's running

• CHU de Lille
  Lille, France Recruiting

Study contacts

• Study coordinator: Sophie CATTEAU JONARD, PhD
• Email: Sophie.catteau@chu-lille.fr
• Phone: +33 3 20 44 63 09

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Crinecerfont safety testing in babies with classic CAH under 4 years old

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  Recruiting at 11 sites Phase 2 Neurocrine Biosciences · San Francisco, California and 10 other locations · NCT07536269

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.