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Welcome to the Adenoid Cystic Carcinoma Registry (ACCR)
at The University of Virginia
What is the ACCR?
What material is the ACCR requesting?
Why is this material so useful?
What will scientists do with this material?
How do I participate?
Forms to fill out & mailing address
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?
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. The tissue is then processed to remove the water and to infuse it with wax (paraffin). The result is that the tissue is made firm within a wax block. This is commonly referred to as a paraffin block, or as formalin-fixed paraffin-embedded (FFPE) tissue. Thin sections are shaved from this paraffin block, placed on a glass slide, stained, and then examined under a microscope by a pathologist. The sections taken are much thinner than a human hair, and since the tissue in the block is usually several millimeters thick, there often is tissue left over in the block. The blocks can be stored indefinitely, and various local, state and federal regulations determine how long a hospital will keep the blocks. Many hospitals destroy their blocks after the mandatory storage time (approximately 7 years).
Why is this material so useful?
There are no animal models of ACC. Only a few cell lines (cancer cells maintained in plastic dishes) have ever been made from ACC, and these are not widely available. ACC is relatively rare, and few single institutions will see large numbers of ACC patients in any given year. Thus the archival paraffin blocks that contain ACC are among the best sources of tissue to collect and study, in order to get a substantial number of tumors.
What will scientists do with this material?
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. Please be aware that these forms are "PDF" files. This means that before you can read, download, or print these files, you must install Adobe Acrobat Reader on your computer. Don't worry, this is simple, and it is free. Just click on the link below and follow the directions. When you are done, close that window.
Download Adobe Acrobat Reader for free!
To make it easier we have combined all the forms you need into one single file (Consent Form, Release of Specimen Form, Contact Information, and the Registry Questionnaire). To download the forms just click on the link below (or the UVA logo).
Click on the University of Virginia seal to download the ACCR forms.
(15 pages, total download size 195KB) |
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If you are considering donating frozen or fresh tissue samples from your tumor taken at another institution, click on the link to the right for more information. |
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Please send the completed forms to the address below.
PLEASE BE SURE THAT YOU HAVE SIGNED AND DATED THE CONSENT AND TISSUE RELEASE FORMS or we cannot enter you into the registry.
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.
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