RecruitingNCT06744283

Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia

The Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia: an Ethnographic Study


Sponsor

National Cancer Institute (NCI)

Enrollment

20 participants

Start Date

May 6, 2026

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Min Age: 18 YearsMax Age: 100 Years

Plain Language Summary

Simplified for easier understanding

This study explores how people with Fanconi anemia (FA) — a rare genetic condition that raises the risk of several cancers — experience and manage anxiety related to cancer screening. Researchers will observe clinical visits and interview participants to learn how to better support this population. **You may be eligible if...** - You are 18 years or older - You have a confirmed diagnosis of Fanconi anemia - You are enrolled in the related NIH FACSS study - You can communicate in English (spoken, written, or read) **You may NOT be eligible if...** - You do not meet the above criteria - You have opted out of allowing your data to be used for research - You have declined to have a researcher shadow your clinical visits Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(1)

National Cancer Institute (NCI)

Bethesda, Maryland, United States

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NCT06744283


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