Questionnaire Study to Assess the Outcomes of the Management of Congenital Adrenal Hyperplasia Individuals

Launched by MANCHESTER UNIVERSITY NHS FOUNDATION TRUST · Jan 27, 2022

Keywords

ClinConnect Summary

This clinical trial is looking to gather information from women and young girls with Congenital Adrenal Hyperplasia (CAH) and their parents. The focus is on understanding how different treatments for CAH, whether conservative (non-surgical) or surgical, have affected patients over the last 50 years, especially regarding their physical appearance and emotional, social, and sexual well-being. The study also wants to hear thoughts from families about possibly removing the option of early surgery for girls with CAH.

To participate, individuals must be 2 years or older and have been born with certain physical traits related to CAH. Parents of these individuals can also join in the study. Participants will fill out questionnaires, which are designed to be straightforward and accessible. This study is currently looking for participants, and it's an opportunity to share experiences that may help improve care for others with CAH in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Parents of CAH affected 46XX individuals aged 2 years and over who were born with virilised genitalia
• • CAH affected 46XX individuals who were born with virilised genitalia, 16 years of age and over.
• Exclusion Criteria:
• • Female DSD children with virilisation which is not due to CAH
• • Non-virilised CAH patients
• • CAH patients raised as male
• • Parents of individuals excluded as above
• • Participants who cannot understand questionnaires in English