Long-Term Health of Pediatric Cushing Disease Survivors

This observational study is looking at the long-term health of people who had Cushing disease (a condition where your body makes too much cortisol due to a pituitary tumor) when they were children or teenagers. Even after successful treatment, some problems from high cortisol levels might continue. Researchers want to understand these lasting effects, especially how body mass index (BMI) changes over time compared to the general population. You may be eligible if you are between 10 and 42 years old, were diagnosed with Cushing disease before age 21, and have been successfully treated.

Study design
This is an observational study aiming to include 600 participants. It is not a treatment study, but rather observes health outcomes over time.
What's involved
Participants will be screened with a medical history and complete an online survey about their or their child's physical and mental health.
Compensation
Not stated in the trial record.
Follow-up
The study will track differences in body mass index z-score at baseline, 5, 10, 15, and 20 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03831958

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

Recruiting
Not specifiedAges 2–90Observational
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
~600 participants
Updated 2026-09-16 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Difference in body mass index z-score of subjects previously treated for Cushing disease compared to general population
Measured over baseline, 5, 10, 15, 20 years
Cushing Disease

NCT03831958

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • National Institutes of Health Clinical Center

    Bethesda, Marylandstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Deborah P Merke, M.D. · PRINCIPAL_INVESTIGATOR · Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Opens a ready-to-send draft in your own email app — review before sending.

  • Difference in body mass index z-score of subjects previously treated for Cushing disease compared to general populationbaseline, 5, 10, 15, 20 years

    The primary outcome measure of the study is the difference in the Body Mass Index (BMI) z-score of the patients previously treated for pediatric CD compared to the general population, as calculated by data derived from the NHANES study.