Actively Recruiting
Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia: An Ethnographic Study
Led by National Cancer Institute (NCI) ยท Updated on 2026-06-08
20
Participants Needed
1
Research Sites
30 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This research aims to understand the anxiety related to cancer screenings in adults with Fanconi Anemia (FA), a rare inherited cancer syndrome that causes various physical problems and a higher cancer risk. The study focuses on participants already enrolled in the Fanconi Anemia Cancer Screening Study (FACSS), which screens people with FA for cancer annually. The goal is to learn more about how these screenings affect anxiety and the experience of those living with FA. Participants are observed during their routine FACSS visits without additional visits required. An observer will be present in the room during these visits to quietly note body language, signs of worry or depression, clinic environment factors, accessibility concerns, social support, challenges faced in FACSS, motivation to participate, and interactions among staff, participants, and care partners. Data from past FACSS visit notes and medical records will also be reviewed. During the study, participants will be involved only during their usual FACSS visits, with an observer silently taking ethnographic field notes. The main measurement is the examination of screening-related anxiety through these observations at clinical center visits. The study collects detailed information to better understand the emotional and social context of cancer screening for people with FA, with no extra procedures or interventions beyond their regular clinical care.
CONDITIONS
Brief Title
Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants must be enrolled in the Fanconi Anemia Cancer Screening Study (FACSS) protocol.
- Participants must be 18 years of age or older.
- Participants must have a diagnosis of Fanconi Anemia.
- Participants must be able to speak, read, and write in English to understand and agree to verbal consent.
- Clinical visits observed are limited to initial visits and/or return of results visits at the NIH Clinical Center for FACSS.
You will not qualify if you...
- Individuals who do not meet the eligibility criteria.
- Subjects who declined or opted out of allowing their data to be used for future research.
- Subjects who orally declined to have Dr. Emily Pearce shadow their clinical center visits.
- No other exclusion criteria apply.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Varies based on clinical visits
Participants are observed during their cancer screening visits as part of the Fanconi Anemia Cancer Screening Study to explore the experience of screening-related anxiety.
Initial and return of results visits at the NIH Clinical Center
Trial Site Locations
Total: 1 location
1
National Cancer Institute (NCI)
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
E
Emily E Pearce
S
Sharon A Savage, M.D.
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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