Fanconi Anemia Cancer Screening Study Participation
Join the Study
If you're interested in joining the study, please visit the Fanconi Anemia Cancer Screening Study enrollment website, or call 1-800-518-8474 for more information.Join the Study
What to expect?
Participants will be invited to come to the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland, to complete baseline screening and annual follow-up evaluations for up to 10 years. Interim screening evaluations can be completed at the participant’s local institution, or at the NIH Clinical Center. Participants unable to travel to the NIH Clinical Center can have baseline screening and all subsequent evaluations at the participants' local institutions for the duration of the study period.
Who can join?
- An individual who is 12 years or older and has been diagnosed with FA
- An individual with FA who is 8 to 12 years of age and has a history of persistent visible oral lesions, recent onset swallowing difficulty, or other concerning symptoms.
All travel-related costs such as transportation, meals, and lodging will be covered by the study and there is no charge for any of the medical visits or tests done at the NIH.
Participants who enroll in the study will be asked to provide/complete the following:
- Questionnaires about your personal medical history
- Written consent for researchers to review your medical records
- History and physical examination and other examinations including ear, nose, and throat/otorhinolaryngology, dental and dermatology
- Specimen collection such as a saliva sample, blood tests, oral photographs, oral rinse, and oral brush biopsy and liver ultrasound
- Other procedures may be offered if clinically indicated after a separate consent is obtained
Participants will also be followed on the study remotely through the use of follow up questionnaires and medical record review every six months as long as they are willing to do so.
Individuals from other countries are eligible provided they or their parent or legal guardian understands and is willing to provide informed consent in English. The individual should also be able to travel to the United States on their own, if they are invited to come to the NIH Clinical Center.
When the tests are finished, a doctor will discuss the results with you and the need, if any, for clinical follow-up. If cancer or other medical conditions are found during your participation in this study, we will assist you with finding appropriate care by working closely with your doctor.