Actively Recruiting
Long-Term Follow-Up of Survivors of Pediatric Cushing Disease
Led by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) · Updated on 2026-04-21
600
Participants Needed
1
Research Sites
1087 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Background: The pituitary gland produces hormones. A tumor in this gland can cause it to produce too much of the hormone cortisol. Too much cortisol in the body causes Cushing disease. This disease causes many problems. Some of these problems might persist after the disease is cured. Objective: To find out the long-term effects of exposure to high levels of cortisol during childhood and adolescence. Eligibility: People ages 10-42years who were diagnosed with Cushing disease before age 21 and are now cured and have normal or low cortisol levels People related to someone with Cushing disease Design: Participants will be screened with a medical history. Participants will complete an online survey. This will include questions about their or their child s physical and mental health. All participants will be seen at 5 -year intervals after cure of Cushing disease (5yr, 10yr, 15yr, 20yr (last visit)) Participants who have a relative with Cushing disease will have a medical history and blood tests or cheek swabs. Participants who have the disease will have: Physical exam Blood tests Cheek swab DXA scan: A machine will x-ray the participant s body to measure bone mineral content. For participants who are still growing, a hand x-ray Participants with the disease may also have: Hormone stimulation test: Participants will get a hormone or another substance that will be measured. Serial hormone sampling: Participants blood will be measured several times through a thin plastic tube in an arm vein. Urine tests: Participants urine may be collected over 24 hours. MRI: Participants may have a dye injected into a vein. They will lie on a table that slides into a machine. The machine will take pictures of the body.
CONDITIONS
Official Title
Long-Term Follow-Up of Survivors of Pediatric Cushing Disease
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Males and females aged 10 to 42 years who were diagnosed and successfully treated for Cushing disease before age 21
- Patients with normal or low cortisol levels documented within the past 6 months
- Patients who have undergone surgical and/or other treatments like radiation or medical therapy
- Patients or legal guardians must provide consent or assent
- Family members aged 2 to 90 years with a family history of pituitary tumors who agree to participate in DNA/linkage analysis
You will not qualify if you...
- Pregnancy
- Medical, physical, psychiatric, or social conditions that would make participation unsafe or not in the participant's best interest
- Critically ill, unstable, or severe organ failure that could affect endocrine evaluation or burden study resources
- Such excluded participants may still participate in the online questionnaire only
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
D
Deborah P Merke, M.D.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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