Study on anogenital cancers in individuals with Fanconi Anemia recruiting participants

Principal Investigator: Kathryn Pennington, MD
Division of Gynecologic Oncology
University of Washington
Co-Principal Investigator: Agata Smogorzewska, MD, PhD
Laboratory of Genome Maintenance
Rockefeller University

INDIVIDUALS WITH FANCONI ANEMIA (FA) HAVE AN INCREASED RISK OFDEVELOPING ANOGENITAL CANCERS (VULVAR, CERVICAL, VAGINAL, AND ANALCANCERS). WE DON’T KNOW THE BEST AND SAFEST WAY TO TREAT THESECANCERS IN INDIVIDUALS WITH FA. WE NEED YOUR HELP!

WHAT IS THE STUDY?
The study will develop a detailed registry of cases of anogenital cancer that have occurred in individuals with FA. The database will include information about how the cancer was diagnosed and treated, side effects experienced, and long-term outcomes. When possible, molecular profiling of the tumors will also be done.

WHAT IS THE GOAL OF THE STUDY?
Our goal is to increase our knowledge about the prevention, treatment, and cure of anogenital cancer in individuals with FA.
Treating anogenital cancer in individuals with FA is uniquely challenging. The most effective and safest way to treat anogenital cancers in individuals with FA is unknown because only a small number of cases have been reported in the medical literature, often with incomplete information and follow-up available. The information gathered in this study may help us to understand how these cancers usually behave and learn the best way to treat these cancers.

ARE YOU ELIGIBLE?
You may be eligible if you have FA and have been diagnosed with an anogenital cancer, are willing to allow the study team to access your medical records, and are willing complete questionnaires every 6 months.

WHAT TO EXPECT?
You will be asked to give permission for our study team to access your medical records. You will fill out an initial questionnaire about your health, and will fill outa follow-up survey every 6 months. The study team will compile this information and build a secure registry.
You will also be asked to consider allowing researchers to obtain tumor tissue from a prior biopsy/surgery for your cancer to perform molecular profiling of the tumor (through the International Fanconi Anemia Registry (IFAR), based in New York).

WHO DO I CONTACT?
For more information and to see if you are eligible, contact the study coordinator: Enna Manhardt,
ennahun@uw.edu
or call 206-616-3913

THIS STUDY IS SPONSORED BY: