Who are we ?
We are a group of pathology and research departments based in hospitals across Europe. Each hospital is involved in one or more of the following areas:
- The care of cancer patients
- Research into how cancer develops
- Research into new cancer treatments
What do we want ?
To diagnose cancer a piece of tissue is taken from the affected area. This is called a tissue biopsy. This is used by a pathology department to diagnose cancer. Only a small sample of the tissue biopsy is needed to diagnose a cancer. Just as written information is stored in patients' notes the sample used to diagnose cancer is then kept in the archives of the pathology department.
The parts of the tissue biopsy which are not used are then discarded. This is the tissue which we want to collect.
Why do we want tissue ?
The biopsy tissue of a cancer contains clues about how cancer develops. We want to collect and store this valuable tissue in order for it to be used in future cancer research
Why international ?
In order to do research on all cancers large amounts of tissue need to be collected in a coordinated way. Collection on an international scale means that scientists/doctors can quickly have access to adequate amounts of tissue (particularly for rare cancers).
What will we do with the tissue ?
There are strict instructions about how to store human tissue. These are individual to each country. All tissue will be frozen in an internationally standardised way. The frozen tissue will then be stored in the hospital where the patient has been diagnosed/treated.
All of the tissue samples for the collection are given a code number. This is so all samples are anonymous. This is usually done by the technician who works closely with the pathologist involved in the diagnosis of the original tissue sample.
Why do we want data ?
To maximise the value of the human tissue samples, information about the patient and the samples is very important. A TuBaFrost electronic database will securely store all this information. The data collected will include:
- Diagnosis - identification of the type of cancer
- Type of tissue collected - the origin, i.e. breast, skin, colorectal
- Quanlity of tissue collected - collection and storage details
The identity of the donor is not on this database.
The tissue is stored in the hospital where the donor was diagnosed/treated. It stays there until it is used or sent to another hospital or research centre within the TuBaFrost group. The electronic database will track samples throughout the network. The tissue is not sold. The exchange of tissue to other hospitals is regulated by a contract which uses the national regulations of the country supplying the tissue.
Tissue samples within the TuBaFrost collection will only be used for research which has been approved by ethics committees. This ensures that the tissue is only used for the best quality research and only for the specific reasons given to the ethics committee.
What is the benefit to Scientists/Doctors ?
The scientist/doctor who collects the sample is taking part in an international scheme to support future research in to diagnosis and treatment of cancer.
The scientist/doctor who uses the sample will know that the tissue they receive is of high quality because of the international standards which all hospitals in the TuBaFrost group agree too.
What are the benefits to the patients
The main reason for collecting tissue samples is to find new ways of diagnosing and treating cancer. The benefit to the donor are few. The main benefit is to future cancer patients.
What are the Patient's rights ?
The patient has the right to withdraw consent for the storage or further use of left-over tissue at any time through consultation with the treating doctor. It is possible that if the patient changes his/her mind a long time after an operation, some of the tissue may already have been used for research. Whatever the patient's decision, it will not affect his/her surgery or any other part of his/her treatment or care.
What will happen to the results of the research ?
Results will be published as appropriate in various scientific magazines and the links to these research papers will be published on the TuBaFrost website. All information will be anonymised and therefore the patient will not be identified in any publication.
