Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia (NCT06744283) | Clinical Trial Compass
RecruitingNot Applicable
Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia
United States20 participantsStarted 2026-07-01
Plain-language 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.
Who can participate
Age range
18 Years – 100 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
* INCLUSION CRITERIA:
Participants enrolled in the FACSS protocol who are 18 years of age or older are eligible for inclusion in this study. Clinical visits eligible for ethnographic observation are limited to initial visits (medical history and physical examination) and/or return of results visits happening in the context of their first visit to the NIH Clinical Center for the FACSS protocol and/or annual return visits.
To be eligible, the following requirements must be met:
* Ability for the participant to speak, read, and/or write in English to understand and agree to a verbal consent.
* Participants must have a diagnosis of FA.
* Participants must be 18 years of age or older.
EXCLUSION CRITERIA:
* Individuals who do not meet 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 exclusionary criteria apply.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study is focused on understanding the anxiety that comes with cancer screening in Fanconi Anemia rather than testing a new treatment, how might participating in this kind of research actually affect my or my child's emotional experience during routine screening visits?
2This trial is collecting data through something called ethnographic field notes, which sounds like researchers observing and recording experiences in real time — can you explain what that would actually look like during our clinic visits, and how our privacy would be protected?
3Given that Fanconi Anemia already requires such intensive and frequent cancer surveillance, do you think the anxiety we experience around those screenings is something that's being adequately addressed right now, or is there a gap that a study like this is trying to fill?
4Since this is listed as Phase NA, meaning it's an observational or behavioral study rather than a drug trial, does participating carry any medical risks, and would it require additional appointments beyond what we're already scheduled for?
5Are there existing support resources — like counseling or patient support groups specifically for Fanconi Anemia families — that you'd recommend we explore alongside or instead of joining this study to help manage screening-related anxiety?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Examine screening-related anxiety usingethnographic field note