About the Study
Who runs this study?
Meg Keil, PhD, CRNP Principal Investigator
What is this study about?
This study aims to help us understand the long-term effects after cure of Cushing disease that was diagnosed and treated in childhood/adolescence. Subjects will be contacted at 5yrs, 10yrs, 15yrs, and 20yrs post-treatment for Cushing disease to participate in the study.
The online part of the study consists of completion of questionnaires to help us learn more about health: physical, cognitive, emotional and behavior; as well as socioeconomic and demographic information. As described in the consent form, you will receive compensation for the questionnaires you complete.
You will be invited to schedule a 3- 4-day inpatient stay at NIH and the following tests may be obtained: MRI or pituitary and brain, bone density, carotid MRI, echocardiogram, blood tests (general health screen and endocrine function), nutrition consult, and cognitive function.
Goals of study
To learn about the long-term effects after successful treatment of Cushing disease in childhood on physical, mental, emotional, and cognitive outcome measures. This information will help us to design interventions to improve patient outcomes.
What kind of commitment is involved?
Subjects will be contacted at 5yrs, 10yrs, 15yrs, and 20yrs post-treatment for Cushing disease to participate in the study (both the online and inpatient visit).
Adult subjects or Parents of pediatric patients will be asked to complete the following questionnaires on the study web site:
- Medical history and demographic information
- Cushing quality of life
- Overall quality of life (Child Health, or SF-36)
- Behavior checklist
- PROMIS questionnaire: Perceived Stress
- PROMIS questionnaire: Cognitive function
- PROMIS questionnaire: Emotional Support
- Affective reactivity index
- Screen for anxiety
- Mood Feelings
- Disability scale
Parents and participants: your responses to questionnaires will be reviewed by one of the members of the study team and if an area of concern related to mental health is identified, the parent will be contacted and a referral will be made to a mental health provider.
An email alert will notify one of the members of the study team that the adrenal insufficiency symptom questionnaire has been completed so that responses can be reviewed soon after being submitted. If there is a concern about possible adrenal insufficiency, the parent will be contacted and the referring physician may be notified.
How can I ask questions or ask for help?
Contact: Meg Keil, PhD, CRNP at: keilm@mail.nih.gov; or 301-435-3391