Actively Recruiting
Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia
Led by National Cancer Institute (NCI) · Updated on 2026-05-14
20
Participants Needed
1
Research Sites
36 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Background: Fanconi anemia (FA) is a rare, inherited cancer syndrome. FA causes a range of physical issues. Children with FA may have abnormal features; these may include a small head and eyes and issues with their internal organs. Young adults have a much higher risk of cancer. To screen for these cancers, people with FA may need to pursue many visits with different doctors. This constant need for cancer screening may cause anxiety for people with FA. Objective: To learn more about anxiety related to cancer screenings in people with FA. Eligibility: Adults aged 18 years and older with FA. They must also be enrolled in FACSS. FACSS is a study that screens people with FA for cancer every year. Design: All data gathered for this study will occur during routine FACSS visits. No other visits are needed. An observer will be in the room during participants FACSS visits. The observer and participant will have a polite introduction. After that, the observer will not interact with participants in any way. The observer will note details about the participants, such as: * Body language. * Worries about screening. * Comments that suggest anxiety or depression. * Clinical environment, such as d(SqrRoot)(Copyright)cor and temperature. * Accessibility issues. These can include lights and noises as well as ease of traveling around the clinic center. * Evidence of social support, such as engaging in the FA community. * Challenges they ve had in FACSS. * Their motivation to participate in FACSS. * Relationship dynamics among clinic staff, participants, and their care partners. Data will also be collected from FACSS visit notes dating back to December 2024 and from participants medical records.
CONDITIONS
Official Title
Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants enrolled in the FACSS protocol who are 18 years of age or older
- Ability to speak, read, and/or write in English to understand and agree to verbal consent
- Diagnosis of Fanconi anemia
- Clinical visits eligible for observation include initial visits and return of results visits at the NIH Clinical Center
You will not qualify if you...
- Individuals who do not meet eligibility criteria
- Those who declined or opted out of allowing their data to be used for future research
- Those who orally declined to have an observer shadow their clinical center visits
- No other exclusionary criteria apply
AI-Screening
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Trial Site Locations
Total: 1 location
1
National Cancer Institute (NCI)
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
E
Emily E Pearce
CONTACT
S
Sharon A Savage, 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
1
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