An observational study in Fanconi Anemia, sponsored by National Cancer Institute (NCI). Active, not recruiting at 1 site in United States. Open to participants aged 18 Years to 100 Years. Per ClinicalTrials.gov, last updated 2026-10-02.
Sponsored by National Cancer Institute (NCI) · Observational
Among 68 studies in Fanconi Anemia with a site in United States — 14 open to participants now, 18 under way, none of them phase 3. Fanconi Anemia · United States.
Among the 68 studies in Fanconi Anemia with a site in United States, this one is the 13th largest by planned enrollment of the 17 observational ones that give a count, is the only one that started in 2024, is one of 17 observational ones, reaches primary completion later than 8 of the 16 other live ones, and was the 63rd registered.
95 studies on the registry are indexed under Fanconi Anemia; 20 are open to participants now.
Browse Fanconi Anemia studies →14 of the 68 studies in Fanconi Anemia with a site in United States are open now. Recruiting first, the newest first:
Rockefeller University · Sites in United States
Ages 18+
University of Minnesota · Sites in United States
Ages 18+
National Cancer Institute (NCI) · Sites in United States
Ages 8–90
Masonic Cancer Center, University of Minnesota · Sites in United States
Ages 18–45 · Healthy volunteers
Porteus, Matthew, MD · Sites in United States
Ages 2+
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 15 Fanconi Anemia studies recruiting now, 8 (53%) set no upper age limit and 5 (33%) stop at 75 or younger; 11 take children under 18; 2 take healthy volunteers.
This study: 18 Years to 100 Years · all sexes · no healthy volunteers.
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68 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 22 · Phase 2 26 · Phase 3 2
First in 1975; this study’s year is marked. 1 started in 2024.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 20 is below the median of 94 across 24 observational studies indexed under Fanconi Anemia.
Median enrollment 21 across the 48 interventional studies, 67 across the 17 observational. Of the 47 that completed or were terminated, 17 (36%) have results posted.
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3 of 68 have an industry lead sponsor. The 10 most frequent:
National Cancer Institute (NCI) is the lead sponsor of 3,556 studies on the registry; 336 are open to participants now.
Of its 412 completed or terminated interventional studies of FDA-regulated products, 374 (91%) have results posted.
National Cancer Institute (NCI) has 4 studies filed under Fanconi Anemia — fewer than ten, so there is no comparison to draw.
5 of the studies in Fanconi Anemia with a site in United States that are under way reach primary completion within a year, 0 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT02143830Children's Hospital Medical Center, CincinnatiHSCT for Patients With Fanconi Anemia Using Risk-Adjusted Chemotherapy | 2026-12 |
| NCT05973656Masonic Cancer Center, University of MinnesotaRole of Acetaldehyde in the Development of Oral Cancer | 2027-01-01 |
| NCT03579875Masonic Cancer Center, University of MinnesotaAlpha/Beta TCD HCT in Patients With Inherited BMF Disorders | 2027-01-01 |
| NCT03924401Emory UniversityAcute GVHD Suppression Using Costimulation Blockade to Expand Non-malignant Transplant | 2027-03-01 |
| NCT00542373M.D. Anderson Cancer CenterWidefield Fluorescence and Reflectance Imaging Systems and Oral Tissue Samples in Monitoring Participants at Risk for Developing Oral Cancer | 2027-04-30 |
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Among the 68 studies in Fanconi Anemia with a site in United States, from their registry updates:
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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:
Data will also be collected from FACSS visit notes dating back to December 2024 and from participants medical records.
Study Description:
This study will explore the experience and management of screening related anxiety in Fanconi Anemia (FA) among participants in the Fanconi Anemia Cancer Screening Study (FACSS) protocol (NIH IRB #:001109). Knowledge generated from this study will improve understanding of the experience and management of cancer screening-related anxiety in the context of complex, rare disease, while providing much-needed information about the health experiences and challenges within the FA community.
Objectives:
To collect ethnographic observational field notes to explore the nature of cancer screening-related anxiety experienced by participants in the FACSS screening study at the NIH clinical center.
The study team will conduct a concurrent mixed methods study involving ethnographic data collected from field notes of clinical visits for participants in the Fanconi Anemia Cancer Screening Study (FACSS) protocol (NIH IRB #: 001109), including initial intake and/or return of results.
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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:
EXCLUSION CRITERIA:
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.
Examine screening-related anxiety usingethnographic field note
This mixed methods study will examine screening-related anxiety using ethnographic field notes include: 1) content analysis of predetermined categories of observation, and 2) qualitative analysis of field notes describing patient provider communication.
Time frame: At Clinical Center Visit
Plan to share: No — Participants will not receive individual research results. Aggregate results of the research will be presented to the Fanconi Cancer Foundation (formerly Fanconi Anemia Research Fund) leadership and will be developed into a manuscript for publication.
No publications or documents are linked to this record.
Started Dec 2024 (actual). Primary completion is estimated for Jan 2030, 60 months after the start.
Since we started tracking on Sep 25, 2026, the dates moved once, on Oct 2, 2026: start Sep 2026 → Dec 2024, primary completion Sep 2026 → Jan 2030 and completion Jan 2027 → Feb 2030.
Earlier changes are on the record history on ClinicalTrials.gov ↗
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is active, not recruiting, as verified in Sep 2026. You cannot join it, but the record below documents what was studied.
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National Cancer Institute (NCI) →