Eye Cancer Tissue Core
In order to create the Eye Cancer Tissue Core we will need to employ a repository tool for bio specimen inventory, tracking and basic annotation. Available through the US NIH sponsored caBig program, Version 1 caTissue permits users to track the collection,
storage, quality assurance, and distribution of specimens. It also allows for tracking of new specimens derived from existing ones (e.g. for DNA analysis). It also allows users to find and request specimens that may be used in molecular, correlative studies.
- Define EYEcancerBig Tissue Banking Centers
- Define an AJCC-UICC working group approved SOP
- Incorporate CaTissue Tools
- Multi center cooperative research (specimen - sharing) will only be performed at the discretion of each physician/center.
Hypothetical Example 1: Without Research Tissue Banking
In the future, Dr. Jones finds a genetic marker that can be used to determine whether or not a malignant melanoma will metastasize. In her busy hospital practice sees 100 new cases each year.
Dr. Jones works very hard to sample each and every tumor for 5 years in order to collect 500 cases. Then she watches those 500 cases for five more years to see if this genetic marker was correct. Without cooperation from multiple centers, this one study takes 10 years to complete.
Hypothetical Example 1: With Research Tissue Banking
In another future, EyeCancerBIG researchers spent the time to establish a network of eye cancer tissue banks. Now Dr. Jones finds that same genetic marker. However, now there are 10 participating institutions that can each send 100 small samples from their collection of cases. If each had been collected 5 years ago, then both treatment and survival data would be immediately available on those patients. With research tissue banking available, Dr. Jones can analyze that tissue and find out if this genetic marker is valid within 3 months. Cooperative research saved 9 years and 9 months for patients and Dr. Jones.
Editors Note: Now that is progress!
Frequently asked questions?
Q: WHO WILL HAVE ACCESS TO THE TISSUE SAMPLES?
A: Each individual EYECancerBig Center Principal Investigator (PI) will determine who will have access to tissue samples.
Q: WHAT KINDS OF TESTING WILL BE DONE ON THE TISSUE SAMPLES?
A: Researchers are interested to see how normal cells become cancer cells, how our bodies react to those cancer cells, how cancer cells spread in the body, and how cancer cells respond to treatment. In order to find answers to those questions, standardized laboratory tests are performed by qualified investigators with funding to conduct testing on cancer tissue.
Q: WHAT IS GENETIC RESEARCH?
A: Some human diseases are caused by a defective gene. An example is retinoblastoma, a cancer that develops during childhood. If a child receives the defective gene, the child will likely develop the cancer. To help you understand the nature of genetic research, you may visit the following websites on the Internet:
http://rex.nci.nih.gov/behindthenews/ugt/ugtframe.htm"Understanding Gene Testing", another website, provided by the National Cancer Institute, that explains gene testing.
http://www.genome.gov/glossary.cfm "Glossary of Genetic Terms", which has written descriptions of terms, illustrations and also audio descriptions recorded by experts that provide additional details that you may find very useful.
Q: WILL GENETIC TESTING BE DONE ON SUBMITTED TISSUE
A: Genetic research on cancer tissues involves the discovery of genes that are involved in the process of cancer transformation. Complete DNA-typing will not be done without the written permission of the patient. Research involving the discovery of specific genes requires a specific protocol and specific patient consent.
Q: WHERE ARE THE TISSUE SAMPLES STORED?
A: EyeCancerBIG Tissue Banks are located at affiliated Hospitals, Departments of Pathology and Ophthalmology. Each tissue bank is located in a designated area of the department with access limited to tissue bank personnel. The tissue is stored in a cool, dry environment using normal tissue storing techniques.
Q: HOW IS THE TISSUE LABELED ONCE IT IS RECEIVED?
A: Banked tissue is labeled with the study and case numbers only. These will be the only identifiers associated with the tissue. No clinical information, demographic, or other identifying information is kept in a password protected, backed-up, database only available to Human Subjects Research (HSR) training course certified personnel.
Q: SINCE SPECIMENS ARE STORED NONYMOUSLY, HOW CAN PATIENTS ASK THAT THEIR TISSUE BE RETURNED OR DESTROYED?
A: Since the tissue will be stored for an indefinite period of time. Patients can contact the institution that enrolled them on the clinical trial. The institution will supply the study and case numbers, which will allow retrieval of the specimens. Provided any tissue is left in storage. The tissue also will be returned as needed for patient, physician, or legal reasons. These requests should be sent in writing to the tissue bank manager.
Q: WHAT SAMPLES ARE SENT TO THE TISSUE BANK?
A: At the time of the patient's surgery or biopsy, when tumor/tissue is removed, tissue is sent to the institution's pathology department for routine testing and diagnosis. After that process is completed, the remaining tumor samples are stored in the pathology department. The patient is being asked for permission to use the remainder of the tumor samples for additional research. Since this tissue is removed at the time of surgery or biopsy, the permission to use this tissue will not lead to any additional procedures or expense. In addition, in some clinical trials, patients are asked to submit serum (blood) samples, which are frozen and stored at the tissue bank. Upon receipt, the serum samples are labeled with the study and case numbers only. These numbers then will continue to be the only identifiers associated with these specimens.
Q: UNDER WHAT CONDITIONS WILL DATA BE RELEASED FROM THE TISSUE BANK?
A: The only data released from the tissue bank is the number of specimens available for aggregated cases on each clinical trial. There is never a name or any other identifier given with this information, and no clinical information is available for release.
Q: WILL THE PATIENT BENEFIT FROM THE USE OF THEIR TISSUE?
A: It is unlikely that the patient will experience a direct medical benefit from tissue banking. However, research performed on this tissue may give us important information about prognostic factors, treatment selection factors, and biologic behavior of the tumors studied. If patients decide not to participate, it will not affect the medical care they receive.
Q: WILL THIS RESEARCH RESULT IN THE DEVELOPMENT OF A COMMERCIAL PRODUCT?
A: The research may lead to pharmaceutical development of new products.