Long-Term Follow-Up Study on Children and Young Adults Cured of Pediatric Cushing Disease and Their Families

What this Trial Is About

This research focuses on children and young adults who were diagnosed with Cushing disease, a condition caused by excess cortisol due to a tumor in the pituitary gland. The study aims to understand the long-term effects of high cortisol exposure during childhood and adolescence, especially after successful treatment that normalizes cortisol levels. It explores complications such as hormonal imbalances, metabolic issues, bone density changes, neurocognitive function, and quality of life over many years. Participants include those diagnosed with pediatric Cushing disease before age 21 who are now cured, as well as their family members. The study involves follow-up evaluations at 5, 10, 15, and 20 years after cure. These assessments include online surveys about physical and mental health, on-site visits with physical exams, blood tests, cheek swabs, bone density scans, and possibly hormone tests, urine collection, and MRI imaging. Family members participate in genetic studies through medical history reviews and sample collection. Throughout the study, participants complete questionnaires on health, medication, endocrine disorders, fertility, and socioeconomic factors. On-site visits include neurocognitive testing and imaging. Researchers measure body mass index differences compared to the general population and track various endocrine and non-endocrine abnormalities over time. The study provides long-term monitoring to better understand the lasting impacts of Cushing disease diagnosed in childhood and adolescence.

Long-Term Follow-Up of Survivors of Pediatric Cushing Disease