For Patients

What is tissue preservation?

After fine tissue examination, leftover human tissue that was removed during medical procedures such as surgery, biopsies, or blood tests is saved and stored. This process is called tissue preservation. The tissue that is saved is no longer needed to diagnose or treat your condition and is usually disposed of in a sanitary manner. However, with your written consent, it will be given to the Tumor and Normal Tissue Bank of the National Center for Tumor Diseases Dresden (NCT/UCC), where it will be carefully stored under standardized conditions.

Tissue preservation helps scientists better understand what causes disease, what treatments are promising and how patient care can be improved in the future. Tissue made available for medical research from the Tumor and Normal Tissue Bank is not used for organ transplants or blood transfusions.

Who benefits from the tumor and normal tissue bank?

If you choose to donate your leftover tissue to the Tumor and Normal Tissue Bank, you yourself will probably not benefit directly from the research done on your tissue. However, you will be helping other people who will suffer from your disease in the future.

Your tissue sample helps scientists to research the development and progression of diseases. For example, they investigate why a (cancer) disease develops, how it progresses, and which people are particularly at risk. The answers to these questions can lead to earlier and more precise diagnosis and better treatment.

Just as the research findings of the past decade have led to current therapies, the knowledge gained from studying human tissue today will only improve patient care in the years to come.

When you provide tissue for research, you help the next generations of patients with a similar disease.

What samples are needed for research?

The following samples are used for medical research purposes:

•  diseased tissue, such as from the intestine, breast, kidney or other organs
• Cells from the blood or bone marrow
• components of the blood
• other body fluids

What research approaches are there?

Many different research approaches are based on working with human tissue:

• Investigating the development of diseases, such as cancer, protracted inflammation, cardiovascular disease
• Investigating the properties of diseased cells or altered blood components
• Understanding the progression of diseases in different populations
• Development of new drugs and diagnostic methods
• Discovery of disease characteristics that predict which patients will respond better to a particular treatment.

What influence do I have on the handling of the tissue and my data?

It is entirely your decision whether you give your tissue to the tissue bank of the NCT/UCC or not. Please ask all related questions to your treating physicians. Once all your questions have been answered and you agree to the storage, you will sign a consent form for the storage and further use of tissue samples and body fluids. When you sign the consent form, you are affirming that you understand the information that has been explained to you and that you are willing to donate tissue for scientific purposes.

This consent form will also specify:

•   What information will be shared with the scientists.
•   How to contact the tissue bank director if you wish to withdraw your consent.

You may withdraw your consent at any time. The consent information sheet describes how to contact the tissue bank staff.

You wish to withdraw your consent for scientific use of the tissue . To do so, contact:

Tumor and Normal Tissue Bank at the Institute of Pathology
University Hospital Carl Gustav Carus
Schubertstrasse 15
01307 Dresden
Tel. 0351 458-3037 or -3365

In this case, your samples and your data will be immediately removed from the tissue bank of the NCT/UCC and destroyed.

However, if some of your tissue samples have already been used or passed on for clinical research projects, the tissue bank cannot get this material back. Thus, you will also not be able to revoke consent for scientific research already performed on these tissue samples.

How is my personal data protected?

The Basic Law and the Data Protection Act protect the confidentiality of your personal, medical data. A committee at the University Hospital Carl Gustav Carus, the so-called Ethics Committee, and the Data Protection Officer monitor the work of the Tumor and Normal Tissue Bank of the University Cancer Center.

This ensures that the legal requirements are met, your privacy remains unaffected and the tissue is only used for ethically acceptable studies.

However, if some of your tissue samples have already been used or shared for clinical research projects, the tissue bank will not be able to retrieve this material. Thus, you will not be able to revoke consent for scientific studies already performed on these tissue samples.

What does tissue donation cost?

Tissue donation is free of charge for you and your health insurance. However, you will not receive payment for the tissue donation or for any research results obtained on your tissue.

Does the tissue sample affect my surgery or treatment?

The answer is no. Regardless of whether you choose to provide tissue to research or not, your surgery and/ or medical treatment will be exactly the same. Your decision to reserve tissue will not affect how much tissue is removed during surgery or how often you need to see your doctor.

During your medical procedure, your doctor will remove exactly as much tissue as is needed for complete diagnosis and treatment.

Often, however, some of the tissue material is not needed to diagnose your condition. This leftover tissue, which would normally be disposed of hygienically, will go to the tissue bank of the National Center for Tumor Diseases Dresden (NCT/UCC) if you give your consent.

My (family) doctor has told me that it is very likely that I have a relatively harmless disease. So why am I receiving these records?

All patients treated at the Carl Gustav Carus University Hospital receive these records, even if it may not yet be known what the disease is.

For research into serious diseases, so-called comparative material without changes due to disease is always needed. Providing the tissue samples that would normally be discarded after the research to the tissue bank can be very effective in helping future patients with serious diseases.

Will research results be shared with my employer or health insurance company?

Research results from studies that used your tissue will not be included in your medical records or shared with your employer, your health insurance company, or anyone else.

Will research on my tissue sample contribute to my medical care?

Research results from studies that used your tissue will not affect your care at this time. However, if, for example, a cancer were to return, new treatment options may be available, which may also be based on the scientific study of your tissue sample.

Will I know the results of the research using my tissue samples?

As a rule, it is no longer possible for the investigating scientists to draw conclusions about your donated tissue samples. Thus, informing the individual patient about research results of his or her individual sample is not feasible in most cases.

The results of scientific studies with the tissue, which, however, often take several years and include tissue samples from hundreds or thousands of people, are published in scientific journals or presented in this way at scientific congresses. These publications also serve to educate physicians who are specifically concerned with the particular clinical picture. You can therefore obtain information from your treating physicians about new developments in the diagnosis and therapy of your disease.

You will find further instructions on this in the consent form.

How do I decide whether or not to donate tissue?

Talk about this with your doctor or nurse. Or discuss the information on this website with your family and friends.