Understanding cancer screening-related anxiety in people with Fanconi Anemia
The Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia: an Ethnographic Study
National Institutes of Health Clinical Center (CC) · NCT06744283
This study looks at how people with Fanconi Anemia feel anxious about cancer screenings to better understand and help manage those feelings.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20 (estimated) |
| Ages | 18 Years to 100 Years |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) (nih) |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT06744283 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the experiences and management of anxiety related to cancer screenings in individuals with Fanconi Anemia (FA). Participants, aged 18 and older, will be observed during their routine visits for the Fanconi Anemia Cancer Screening Study (FACSS) at the NIH Clinical Center. The study will collect ethnographic observational field notes to gain insights into the nature of cancer screening-related anxiety within this rare disease community. The goal is to improve understanding and management of these challenges faced by patients with FA.
Who should consider this trial
Good fit: Ideal candidates for this study are adults aged 18 years and older who have been diagnosed with Fanconi Anemia and are enrolled in the FACSS protocol.
Not a fit: Patients who do not have Fanconi Anemia or are not enrolled in the FACSS protocol may not receive any benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to better management strategies for anxiety related to cancer screenings in patients with Fanconi Anemia.
How similar studies have performed: While studies on cancer-related anxiety exist, this specific focus on the FA community is novel and has not been extensively tested.
Eligibility criteria
Show full inclusion / exclusion criteria
* 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.
Where this trial is running
Bethesda, Maryland
- National Cancer Institute (NCI) — Bethesda, Maryland, United States (RECRUITING)
Study contacts
- Principal investigator: Sharon A Savage, M.D. — National Cancer Institute (NCI)
- Study coordinator: Emily E Pearce
- Email: emily.pearce@nih.gov
- Phone: (240) 276-7254
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Fanconi Anemia, Uncertainty, Cancer, Screening