A Patient’s Guide to Tissue Samples
and
Donating Tissue for Research
This leaflet tells you about:
 What happens normally to tissue samples
 Giving permission to allow surplus tissue samples to be used for
research and teaching
If you would like a copy of this leaflet you can download it from our website:
www.rnoh.nhs.uk or contact the Histopathology Department and we will send
you a copy on request.
Histopathology Department
Tel: 020 8909 5354
Research & Development Department
Tel: 0208 909 5377
The RNOH is one of the leading hospitals in the UK for diagnosing and
treating diseases of nerves, muscles and bones. Many patients at RNOH are
given treatment for arthritis, joint and muscle pain (rheumatism), bone and soft
tissue tumours, deformities of the spine (scoliosis) and injuries to the spinal
cord and other nerves. Sometimes tissues are removed during an operation. It
may be necessary to perform laboratory tests on these samples.
You can find out more about RNOH and the research we do, on our website:
www.rnoh.nhs.uk
What are tissue samples?
A tissue sample is any material from your body: it includes blood, urine,
sputum and solid tissue (bone, muscle etc).
We think it is important that you understand what happens to your tissue so in
the paragraphs below we try to explain. However, if there are any questions
that you would like to ask about the use of your tissue, please do not hesitate
to ask your nurse or doctor.
Update 25//07/06
In association with the Institute of Orthopaedics and Musculoskeletal Science, University College London
How is a tissue diagnosis made? What is a tissue block and slide?
Tissue samples are first placed in formalin to preserve them. If the sample is a
biopsy (a very small piece of tissue), the entire sample is analysed. If the
sample is larger the pathologist looks at it and chooses pieces to examine
under the microscope. The pathologist cuts pieces of tissue (about the size of
a postage stamp) from the sample removed by the surgeon and places them
into small plastic containers that are then covered by hot wax, which cools
and becomes hard; this is called a tissue block. Laboratory scientists cut
tissue sections from blocks, put these on a glass slide and stain them. The
pathologist studies the tissue sections under the microscope and makes a
diagnosis. The laboratory scientists may also do other tests to help the
pathologist. These special tests can take one or two weeks to perform. The
pathologist sends the tissue diagnosis to your doctor (this is the pathology
report).
What happens to your tissue after the tissue diagnosis has been made?
Samples of urine, sputum and blood are only kept for a few weeks and are
usually destroyed by burning. Tissue blocks and slides will be stored for at
least 10 years, as part of your medical records. Part of these samples may
also be stored frozen in small tubes for future analysis. The tissue blocks,
slides and frozen material are stored for a long period because it may help in
your treatment in future years. Sometimes it is necessary to go back to a
patient’s tissue slides 20 years after the tissue was taken. For example, it may
be useful for medical treatment to compare a biopsy taken from a person at
40 years of age with a biopsy taken from that person when they were 20. In
some cases, the tissue could also be used to help make a diagnosis in
another family member because some diseases run in families (familial
diseases). Also, if a patient moves to another hospital for treatment, it is
possible to send pathology blocks and slides from RNOH to that hospital to
help diagnosis and treatment.
The part of the tissue sample that is not used in tests is surplus tissue and is
usually kept for a couple of months after which it is destroyed by burning.
What else can happen to your tissue?
Surplus tissue can be very valuable for training doctors and laboratory
scientists, for medical research and for quality control. We need your help for
this to happen. We hope you will not mind if you are asked to donate your
surplus tissue to RNOH.
Why is it useful to donate surplus tissue?
Your donated surplus tissue can be used for a number of purposes:
Training doctors – extra tissue sections are cut for pathology training courses.
Training laboratory scientists – scientists need to learn how to cut and stain
sections; surplus tissue is also needed to develop new tests.
Quality control and audit - Surplus tissue is needed for making sure that the
standard of the work performed by the laboratory scientists and by the
Update 25//07/06
In association with the Institute of Orthopaedics and Musculoskeletal Science, University College London
pathologists is high (quality control and audit). We do this by comparing our
slides, special tests and diagnoses with other laboratories in the UK; extra
tissue sections are needed for these purposes.
Medical research – The RNOH does research to understand and treat
diseases of the nerves, bones and muscles. Your surplus tissue may be
useful for research projects in any of these areas. Examples of our research
projects can be seen on the Trust website.
Who decides what my surplus tissue is used for?
Before any tissue is used for research, the project must be approved by an
external ethics committee and the RNOH Research & Development
Department. This ensures that the tissues are treated with respect, and used
for a worthwhile purpose. The use of tissue for research will not affect your
treatment.
How can I donate my surplus tissue to RNOH for teaching, quality
control and research?
At some stage during your visit to the RNOH, you will be asked to sign a form
indicating whether you wish to donate surplus tissue. We also request that we
can review your medical notes for research purposes. Please remember that
our priority is making a diagnosis and treating your disease. Your medical
treatment will not be affected in any way if you do not want your surplus tissue
used for non-diagnostic purposes.
Is the information about me and my tissue treated confidentially?
Yes. When your surplus tissue is given to doctors or scientists, we give them
the number of the tissue sample, NOT your name. By doing this, the
researchers can never know that the research results link back to you. If you
donate tissue to RNOH, this information is documented on a computer
database in the Pathology Department.
For how long is surplus tissue stored? What is a tissue bank?
Surplus tissue can be used for research as soon as it is taken from your body
but it can also be stored in ‘tissue blocks’ and in plastic tubes in a freezer for
many years before it is used. Surplus tissue stored for teaching and research
is known as a ‘tissue bank’. Some of the conditions that are treated at RNOH
are so rare that we only see one or two patients with that disease each year.
It is difficult to do research and teach about these rare diseases unless we
collect enough samples and store them in a tissue bank.
Will I always know what research is being done on my tissue?
The research projects that are currently being done are described on our
website. However, because medical science changes so quickly, it is not
possible to tell you about future research projects that may use your tissue.
Update 25//07/06
In association with the Institute of Orthopaedics and Musculoskeletal Science, University College London
Could genetic research be performed on my tissue?
Yes, but those doing the research cannot trace your genetic information back
to you. Many diseases are caused by abnormalities in genes. For example,
tumours often grow because a genetic abnormality occurs in a very small area
of your body. To discover why a tumour has developed, we compare genes in
tumours and genes in normal tissue from the same patient. If we find
differences between these sets of genes, it may help us find the cause of this
type of tumour.
We are also studying genes in tissue to understand more about arthritis.
Cartilage is taken from joints of patients with and without arthritis and the
genes are compared, and may give a better understanding about the cause of
arthritis. Once the cause of a disease is known, there is a better chance of
developing treatments. Your genetic information will be kept anonymous.
Could my tissue be used by any other organisations?
Yes, because the work we do involves other hospitals and universities, there
is a possibility that your tissue could be sent to another organisation for a
research project. These projects are always reviewed and approved by both
an external ethics committee and the RNOH Research & Development
Department. In all cases, the tissue is anonymised, so the receiving
organisation will not know your personal details.
Can I change my mind?
Yes. If you no longer want your surplus tissue to be used for research, you
can withdraw your consent by contacting either of the departments listed
below. Your surplus tissue will then be disposed of in the usual manner.
If you would like to know any more, please contact
RNOH Histopathology Department
Tel: 020 8909 5354
RNOH Research & Development Department
Tel: 0208 909 5377
Update 25//07/06
In association with the Institute of Orthopaedics and Musculoskeletal Science, University College London