Could early surgery for a rare hormone disorder cause lifelong regret?

NCT ID NCT07781267

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Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
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Paused for now. It may or may not start again.
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Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

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Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
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The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

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First seen Aug 24, 2026 · Last updated Aug 25, 2026 · Updated 1 time

Summary

This study looks at adults who were diagnosed with classic congenital adrenal hyperplasia (CAH) as children, a condition that requires lifelong hormone therapy and sometimes early genital surgery. Researchers want to know if that childhood treatment, especially surgery, is linked to feelings of regret, lower quality of life, or sexual difficulties later in life. Using questionnaires, they will compare the experiences of female participants in detail and also check how well hormone treatment was adjusted from adolescence to adulthood in all participants.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Standardized questionnaires assessing regret, quality of life, sexual function, and psychological outcomes
What this could lead to
If this study finds that early surgery leads to regret, it could support delaying procedures and changing how CAH is managed in children.
What could go wrong
This is a small, observational study with only 40 participants from one hospital, so findings may not apply to everyone. It relies on self-reported memories and feelings, which can be biased.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 40 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jul 2026

Expected to finish

Mar 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with classic congenital adrenal hyperplasia (CAH) followed in the departments of gynecology, endocrinology, and pediatrics at Lille University Hospital, France.

Ages

18 to 65 years

Sex

Female participants only

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

How to take part

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  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

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  3. A doctor treating you

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Contacts and locations

Locations

  • CHU de Lille

    RECRUITING

    Lille, 59000, France

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