Parenting with 21‑hydroxylase congenital adrenal hyperplasia
Description of Parental Projects, Pregnancies and Pregnancy Outcomes in Patients With a Classic Form of 21-hydroxylase Deficiency
This study uses phone questionnaires to see how 21‑hydroxylase CAH affects fertility, pregnancy outcomes, and parenting in adults with genetically confirmed disease.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 18 Years and up |
| Sex | Female |
| Sponsor | Assistance Publique - Hôpitaux de Paris Academic / other |
| Locations | 4 sites (Bron and 3 other locations) |
| Trial ID | NCT06900153 on ClinicalTrials.gov |
What this trial studies
This is an observational study that collects reproductive, pregnancy, and parenting history by phone from adults with genetically confirmed 21‑hydroxylase congenital adrenal hyperplasia (CAH). Participants will be asked about fertility, pregnancy outcomes, prior genital surgery, hormonal treatment, and psychosocial factors affecting parenting. The study enrolls adults who can give informed consent and meet French administrative and language requirements. Data aim to describe real‑world experiences rather than test a drug or intervention.
Who should consider this trial
Good fit: Adults aged 18 or older with genetically confirmed 21‑hydroxylase CAH who speak French, have French social security coverage, and can provide informed consent are ideal candidates.
Not a fit: Patients who are minors, lack genetic confirmation, do not speak French, are not covered by the French social security system, or are under legal protection may not be eligible or benefit from participation.
Why it matters
Potential benefit: If successful, the results could improve counseling, clinical follow‑up, and support services for fertility, pregnancy care, and parenting needs in adults with 21‑hydroxylase CAH.
How similar studies have performed: Previous observational studies have documented fertility and pregnancy challenges in CAH but comprehensive, phone‑based data focused on parenting experiences remain limited.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients aged 18 or over * Patients with HCS due to 21-hydroxylase deficiency, confirmed genetically * Patients who have been informed and do not object to participating in the research Exclusion Criteria: * Patients who do not speak French * Patients who are not affiliated to a social security scheme or who are not entitled to it * Patients under legal protection, or under guardianship or trusteeship.
Where this trial is running
Bron and 3 other locations
- Hospices Civiles de Lyon - Hôpital Femme Mère Enfant, Service Endocrinologie — Bron, France (Recruiting)
- AP-HP Hôpital Bicêtre, Service Endocrinologie — Le Kremlin-Bicêtre, France (Recruiting)
- Service d'endocrinologie, Hôpital Pitié Salpêtrière — Paris, France (Recruiting)
- Service d'endocrinologie, Hôpital Saint Antoine — Paris, France (Recruiting)
Study contacts
- Study coordinator: Anne BACHELOT
- Email: anne.bachelot@aphp.fr
- Phone: 01 42 16 02 46
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.