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

Part of paid clinical trials in Bethesda, Maryland.

Sponsor
National Cancer Institute (NCI)
Study ID
NCT06744283
Status
Recruiting
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Conditions

  • Fanconi Anemia

Eligibility Criteria

Sex
ALL
Age
18 Years - 100 Years
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jun 16, 2026
Status verified
Mar 2026
Primary completion
Jul 1, 2026
Completion
Jan 30, 2027

Study Design

Enrollment
20 participants (estimated)

Arms

  • Arm: Participants with a diagnosis of Fanconi anemia
    Participants enrolled in the Fanconi Anemia Cancer Screening Study (FACSS) protocol (NIH IRB #: 001109) who are 18 years of age or older are eligible for inclusion in this study.

Primary Outcome Measure

Examine screening-related anxiety usingethnographic field note [ Time Frame: At Clinical Center Visit ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
National Cancer Institute (NCI)BethesdaMaryland20892
Emily Pearce, M.P.H.
[email protected]
240-276-7254

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