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ACC Registry
Welcome to the Adenoid Cystic Carcinoma Registry (ACCR) at The University of Virginia
What is the ACCR?
The ACCR was implemented to help physicians and scientists study adenoid cystic carcinoma. People who have been diagnosed with adenoid cystic carcinoma (ACC) are encouraged to participate in the ACCR. By joining, you will agree to have material left over from biopsies or surgical resections of your tumor made available to researchers to use in their studies. In addition, you will be asked to fill out a questionnaire. Please read the agreement form carefully before signing.
What material is the ACCR requesting?
If you are expecting to have surgery and wish to donate fresh or frozen tumor tissue, you will need to have help from your doctor in coordinating with the hospital in order to make this happen. Please click here for more information.
If you have been diagnosed with ACC, but are not expecting to have additional surgery, there may be leftover tissue samples at your hospital that can be donated to the ACCR. The normal procedure after a tissue sample is removed from your body, either during a biopsy or a surgical procedure, is that the tissue is first placed in a fixative, usually formalin, and then store the tissue in a wax block (paraffin). This is commonly referred to as formalin-fixed paraffin-embedded (FFPE) tissue block. The FFPE tissue is used to make slides that a pathologist looks at under a microscope to make a diagnosis, but there often is tissue left over in the block. By filling out the Registry forms (see below) we can request these blocks from your hospital.
What will scientists do with the tissue samples?
We are interested in the underlying molecular changes that make the
cells in ACC act in a malignant fashion. Cells are made of may types of
molecules that are responsible for their behavior. These include DNA,
RNA and proteins. All of these molecular constituents can be assayed in
tissue found in paraffin blocks. For instance, a researcher may extract
the DNA to try and find mutations that have occurred that cause the
cells to act in an abnormal fashion. Since genes must be made into RNA
in order to have an effect, the types and amount of RNA in cancer cells
can be assayed. In a similar fashion, a researcher can find out which
proteins are present in cancer cells, and to what degree they are
expressed. These types of analyses may come up with useful diagnostic
markers and may suggest abnormal molecular pathways that can
be targeted with specific therapies.
How do I participate?
To participate in the ACCR at UVa, you must complete some forms, and a questionnaire.
To download the forms in a PDF file, click here. (15 pages, total download size 195KB)
If you need forms sent or faxed to you, please call Mr. Craig Rumpel at 434-982-6453.
If you are considering a fresh or frozen tissue donation from an upcoming surgery, we have an information sheet that you can share with your doctor. Please click here.
Please send the completed forms to
the address below.
Adenoid Cystic Carcinoma Registry
c/o Christopher A. Moskaluk M.D., Ph.D.
UVA Health System
Dept. of Pathology
PO Box 800214
Charlottesville, VA 22908-0214
We prefer regular mail, but if for some
reason you wish to use a courier or express mail service the street
address is:
Dr. Christopher Moskaluk
UVA Health System
Dept. of Pathology
RM 3024 Hospital Expansion
1215 Lee Street
Charlottesville, VA 22908
PLEASE BE SURE THAT YOU HAVE SIGNED AND DATED THE CONSENT AND TISSUE RELEASE FORMS or we cannot enter you into the registry.
