These donations are vital to the advancement
of knowledge and understanding of hearing
and balance disorders. Donor' medical
history and consent forms are kept on file
at the Registry's headquarters in Boston,
Massachusetts. Copies of these forms are
forwarded on to the collaborating temporal
bone laboratory nearest the donor. This
laboratory maintains up-to-date medical
histories and ultimately receives the
donated tissues.
THE GIFT OF
HEARING
The inner ear is inaccessible for study
during life due to its encasement within the
skull. While major advances have been made
in our understanding of the changes that
occurr in many ear diseases (such as
otosclerosis, otitis media, Meniere's
diseases, vertigo, noise deafneff, and
tumors), and improved treatments have
resulted, much more can be achieved throiugh
the microscopic study of donated temporal
bones. To date, over 7,000 people have
registered temporal bone donors.
QUESTIONS
& ANSWERS
What is the temporal bone?
The temporal bone is the part of the skull
that contains the organs of hearing and
balance—the middle and inner ears.
Why is the study of my temporal bones
useful?
If you have any type of ear problem (such as
deafness, dizziness, facial palsy,
infection, tumor, or injury) the scientific
study of your ears could be of great medical
value. Because of its inaccessible location
inside the temporal bne, the inner ear
cannot be examined during life. Only when
the temporal bones are removed after death
can the inner ear be studied. You are
never too old to be a temporal bone donor.
The scientific value of your temporal
bones does not diminish with age.
How do I donate my temporal bones?
You can make a pledge to donate your
temporal bones by calling the National
Temporal Bone Registry at (800) 822-1327,
or by returning a postcard which your doctor
can provide for you. The Registry will send
you a donor packet. Complete and return the
enrollment forms. You will then receive a
temporal bone donor card to carry in your
wallet.
Does removal of the temporal bones
change the donor's appearance?
No. There is no change in the
appearance of the donor's head, face or
outer ear. The head remains intact for any
funeral or burial arrangements that the
family wishes, including open casket.
Is there a cost to the donor's family
or estate?
No. The medical professionals who
remove the temporal bones donate their time
or are paid by the laboratory receiving the
temporal bones. Funeral and burial expenses
will remain the responsibility of the
family.
What is the role of the donor's next
of kin?
Your next of kin will make the final
decision about organ donations. Inform your
next of kin (and your health care providers)
of your wish to donate your temporal bones.
Please be sure they understand that their
cooperation is needed and that they must
notify the Registry of your death. The
Registry Coordinator makes all arrangements
for temporal bone removal.
What happens after a donor's death?
The Registry has implemented a nationwide
temporal bone procurement network to ensure
the acquisition of tissue from virtually
every donor. The central point of this
procurement network is the Registry's 24
hour, toll-free hotline (800) 822-1327.
Donor's families and physicians use this
hotline to notify the Registry of the
donor's death. The Registry's Coordinator
then makes necessary arrangments to retrieve
that person's temporal bones.
Can I donate other organs (for
transplantation) as well as my temporal
bones?
Yes.. The removal of the temporal
bones will be delayed for a few hours so
that the transplantable organs can be
removed first.
Can I donate my body to science for
anatomical study and alsodonate my temporal
bones?
The policies oof the donor programs vary.
Discuss this with your local body donor
program to determine if it would be best to
donate to only one of these programs.
Is an autopsy necessary?
The consent form in your donor packet gives
permission for a limited (brain only)
autopsy, necessary for the removal of your
temporal bones. In special circumstances,
temporal bones can be removed without an
autopsy.
What parts of the brain are invloved
with hearing and balance, and is it useful
to study them also?
Most of the brain pathways involved in
hearing and balance are located in a small
part of the brain called the brain stem.
Study of these pathways provides valuable
information about brain disorders that can
also cause deafness and dizziness (e.g.
multiple sclerosis, tumors, infections).
Hence, donating your brain stem in addition
to your temporal bones makes your gift
especially valuable to researchers. The
brain stem is easily removed at the same
time that the temporal bones are obtained,
and with no changes to the donor's
appearance or cost to the donor's estate.
Who supports the National Temporal
Bone Registry?
The Registry is a non-profit organization
supported primarily by funds from the
National Institutes of Health. It is also
supported by the Deafness Research
Foundation, by the Registry's individual
collaborating research laboratories, and by
the contributions of the public.
COLLABORATING
LABORATORIES OF THE REGISTRY
Armed Forces Institute of Pathology,
Washington, D.C.
Baylor College of Medicine, Houston
Bowman Gray School of Medicine,
Winston-Salem
Columbia Presbyterian Medical Center, New
York
Eye & Ear Institute of Pittsburgh
Henry Ford Hospital, Detroit
House Ear Institute, Los Angeles
Johns Hopkins University, Baltimore
Massachusetts Eye & Ear Infirmary, Boston
New York University Medical Center
Northwestern University, Chicago
Ohio State University, Columbus
Shea Clinic, Memphis
SUNY Heath Science Center, Syracuse
University of California, Los Angeles
University of Chicago
University of Colorado, Denver
University of Iowa, Iowa City
University of Michigan, Ann Arbor
University of Minnesota, Minneapolis
University of Texas, Dallas
University of Wisconsin, Madison
THE NIDCD NATIONAL TEMPORAL BONE, HEARING AND
BALANCE PATHOLOGY RESOURSE REGISTRY
For more information, call the Registry
at:
(800) 822-1327 (Voice)
(617) 573-3711 (Voice)
(617) 573-3888 (TDD)
(617) 573-3838 (Fax
or write to:
The NIDCD National Temporal Bone Registry
Massachusetts Eye and Ear Infirmary
243 Charles Street
Boston, MA 02114-3096
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