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

NCT06744283 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 20

Last updated 2026-05-22

No results posted yet for this study

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.

Conditions

  • Fanconi Anemia

Sponsors & Collaborators

  • National Cancer Institute (NCI)

    lead NIH

Principal Investigators

  • Sharon A Savage, M.D. · National Cancer Institute (NCI)

Eligibility

Min Age
18 Years
Max Age
100 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2026-05-27
Primary Completion
2026-07-01
Completion
2027-01-30

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06744283 on ClinicalTrials.gov