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Donation of Tissue
to the UK Multiple Sclerosis Tissue Bank
Thank you for wanting to
find out more about donating tissue to research on multiple sclerosis. We
have prepared some information for you in the format of answers to questions
that we have often been asked. Please do take some time to read through the
following pages, it is vital that you feel you have sufficient information to
make the important decision of whether to become a tissue donor. Also, please
discuss your bequest with your family; it is essential that they do not have
any objections to your wishes. If you or members of your family would like to
discuss any aspect of tissue donation, you are welcome to contact Dr Abhi
Vora (Manager of the Tissue Bank) by telephone on 020 8846 7324 or
e-mail on ukmstissuebank@imperial.ac.uk.
1. Why is tissue needed
for research on multiple sclerosis?
The symptoms experienced by people living with multiple sclerosis are a
result of damage taking place within their brain and spinal cord. Although
there are a number of different ways to conduct research on MS, being able to
study the very tissue that is damaged in this disease is vital to our
developing better treatments. The UK Multiple Sclerosis Tissue Bank retrieves
and stores tissue bequeathed by registered donors and makes samples of the
material available to scientists carrying out research on MS. The donation of
tissue is therefore a precious gift that will further our understanding of MS
and make an essential contribution to finding a treatment for the disease.
2. Who can register as a
donor?
People living with MS, those with conditions other than MS and those who are
healthy can all register on our donor scheme and bequeath tissue for research
on MS. Samples of tissue from people that did not have MS are of crucial
importance since they allow scientists to compare tissue damaged by MS with
the normal situation. Please contact us if you have any specific queries.
3. What tissues are
needed?
Since MS is a disease that is specific to the brain and spinal cord, these
tissues are of most use to research. The cerebrospinal fluid (CSF) bathes the
brain and spinal cord; so, the study of CSF may also provide useful
information. In order to explain why the damage in MS is restricted to the
brain and spinal cord, scientists may wish to compare this organ with other
tissues; for example, muscle. Therefore, we routinely remove the following
tissues and fluid from our donors:
- the entire brain
- the entire spinal cord
- a sample of CSF
- a small sample of muscle from the back
Researchers
have so far requested only this material, but it may be that sometime in the
future scientists will need samples of tissue from other sites of the body in
order to answer specific questions about MS. If this happens, we will always
ask your next-of-kin’s permission before removing any material in addition to
that listed above.
4. When and how will the
tissues be retrieved?
The tissues listed above are removed after the registered donor has died.
Tissues of the brain and spinal cord change very quickly after death and so
material that has been harvested from the body within 24hours of death is of
greatest value to research. Therefore, we have put in place a procedure that
allows us to quickly harvest the donated tissues. The procedure that we follow
is shown in the diagram below, you will notice that we make as many of the
arrangements as possible to make sure that everything is kept as straight
forward as possible for your next-of-kin and carers.
Since it is vital that we are
contacted as soon as possible after your death, we would ask you to ensure
that your next-of-kin or legal representative, and health care professionals
looking after you are aware of your bequest. Everyone concerned should know
that in the event of your death someone needs to immediately telephone the
Tissue Bank. We are on standby 24 hours a day, every day of the year.
The 24-hour Emergency Donor
Line number is: 07 659 132 045
5. What happens to my
body after the tissues have been removed?
The procedure used for removing the tissues will leave your body in a
suitable state to be viewed at an open casket funeral. Since the tissues are
harvested as soon as possible after death, your donation to the Tissue Bank
will not delay arrangements for the funeral. We will organise for the body to
be transported from the hospital where the tissues were removed to the firm
of undertakers that are going to be responsible for the funeral. No extra
costs will be incurred by your relatives or carers as a result of these
procedures.
6.How will my tissues be
made available for research?
The brain and spinal cord that we collect will be brought back to Charing Cross Hospital to be processed into
approximately 250 individual tissue samples, this is done to ensure that each
donation provides material to as many research projects as possible. The
tissues will be preserved and stored safely and securely by the Tissue Bank
until their respectful and ethical use in research. All these procedures are
performed with the utmost respect for the individual who donated the tissues.
We regularly promote our work
in the scientific community so that the Tissue Bank will come to be
identified as a valuable resource for scientists. These events also provide
us with an opportunity to invite scientists to apply for tissue that they can
use in their research on MS. Only once their applications have been received
and reviewed, can we match their requirements with the tissue that we have
available. Therefore, we cannot at this stage, predict what type of research
your tissues will be used for, where or when the research will be carried out
or by whom, but we assure you that we will try and supply as many research
projects as possible to further our understanding of MS.
The Tissue Bank was set-up to
act as a resource for research on MS, so we will consider applications from
all scientists conducting research on MS whether they are working in or
outside the UK or, in the public or private sector. Everyone receiving tissue
from the Tissue Bank agrees to the same terms and conditions.
7. How long will my
tissues be stored and how will they be disposed of?
Your tissues will be immersed in formaldehyde (a liquid fixative that
preserves tissue) or stored frozen at –85oC. These preservation
techniques ensure that tissues will remain usable in research for many years
to come. Some research studies can be carried out on tissue that has been
stored in this way for 10 years or more. If we have to dispose of your
tissues because they are no longer suitable for research, we will do so only
after consulting the MS Society and other appropriate organisations to make
sure that it is done in an ethical and respectful manner. Samples of tissue
that have been used in research are usually archived and after a suitable
length of time respectfully disposed of by the researcher.
8. Does the Tissue Bank
need to know my medical history?
Since it is essential to relate studies on samples of tissue to the medical
history of the tissue donor, we need your permission to access your medical
records. You give this permission by signing the “Consent for the Procurement
of Tissue…” form enclosed. Once we have collected your tissues we will
contact your general practitioner (and neurologist if necessary) and ask to
consult your medical records. The information will be used to prepare a
summary that will be supplied to the researchers who have received samples of
your tissue. This medical summary will also help our neuropathologist to
interpret his findings on examination of your brain and spinal cord. The
neuropathology report that he prepares will be sent to your general
practitioner who can then discuss the findings and their implications with
your family if they have expressed a wish to do so.
9. What do I need to do
now?
If, after having read all the information and discussed it with your family,
you have decided to bequeath your tissues to MS research and none of your
family have raised objections, then you and your next-of-kin will need to
complete and return the three forms enclosed in the pack. We will keep your
original registration forms and send you photocopies for your records. We
will also send you your Tissue Bank Donor Card. Always carry your card so
that in an emergency staff at a hospital will know immediately of your
bequest to the Tissue Bank.
10. What if I do not wish
to proceed or change my mind once I have registered?
We understand that the donation of tissue is not right for everyone, if you
do not wish to register you do not need to do anything further. Thank you for
reading through these pages, we hope that you have found the information
interesting.
If at any time after having
registered you change your mind and for whatever reason decide to withdraw your
consent, just let us know (by telephone, letter or e-mail) and we will return
your original consent forms and remove your details from our computer
database.
If you have any queries either
whilst deciding whether to register or once you have registered, please
contact us.
11. Will my personal
details be kept confidential?
All consent forms and related paperwork is stored in secure filing cabinets.
Personal details of our tissue donors are never divulged to researchers
receiving tissue or anyone outside the Tissue Bank. The databases that store
details of individuals that have requested information, registered as donors
and those that have donated tissues are on a secure computer that is only
accessed by Tissue Bank staff.
12. Who funds and
oversees the work of the Tissue Bank?
The UK Multiple Sclerosis Tissue Bank is wholly funded by the Multiple
Sclerosis Society of Great Britain and Northern Ireland. The Tissue Bank
does not charge any of the researchers (irrespective of where they work) for
the tissue that they have received. Tissue is donated to the Tissue Bank as a
gift; with the MS Society having ultimate custodianship of all material that
it has procured.
The MS Society has put in place
a system of governance that ensures that the work of the Tissue Bank is
regularly reviewed by an independent panel that includes experts on MS, in
tissue banking and in MS research; a person with MS is also a member of the
panel. In addition, the literature, consent forms and procedures that are
used by the Tissue Bank have all gained approval from the appropriate
national ethics committee.
Thank you again for
reading through these pages and for finding out about making a very special
contribution to discovering a treatment for multiple sclerosis.
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