ACC Registry

ACC Registry

Welcome to the Adenoid Cystic Carcinoma Registry (ACCR) at The University of Virginia

Contents

1. What is the ACCR?

2. What material is the ACCR requesting?

3. What will scientists do with the tissue samples?

4. How do I participate?

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.