ABOUT THE TEMPORAL BONE REGISTRY
What is the Temporal Bone Registry?
The Temporal Bone Registry is a non-profit
organization which recruits individuals with hearing and balance problems to donate their
temporal bones for research after death. The Registry coordinates the procurement of these
temporal bones and interacts with the 26 temporal bone laboratories in the US to promote
and support research of the temporal bone and the related hearing and balance disorders.
Who funds the Registry?
The Registry is funded by the National Institutes on
Deafness and Other Communication Disorders (NIDCD) of the National Institutes of Health
(NIH). The NIDCD is the Federal Government's focal point for biomedical and behavioral
research on hearing and balance.
Who runs the Registry?
The Registry has centralized the enrollment and donation
process within one national office at the Massachusetts Eye and Ear Infirmary in Boston.
It's directors and supervisors are all
clinicians and scientists studying temporal bones throughout the United States.
What is the purpose of the Registry
The purpose of the contract awarded to the Registry is to rejuvenate
interest in research in the human temporal bone by
Who works with the Registry?
The Registry works with many groups of people. They
work with hearing and balance clinics and scientific laboratories
which study temporal bones. They also work closely with organ procurement
organizations and mortuaries which assist the Registry in the retrieval of
tissue. the Registry interacts with the deaf and hard of hearing community,
including donors, support groups, publishers.
Who are the Institutes and Universities which are working
closely with the Registry?
Today, there are 26 temporal bone laboratories in
the United States. While all of these laboratories possess temporal bone
collections, only fifteen are actively collecting, processing and studying temporal bone
specimens.
Active Laboratories (Currently processing new temporal bone specimens):
Goodhill Ear Center (UCLA), Los Angeles, CA
House Ear Institute, Los Angeles, CA
Johns Hopkins University, Baltimore, MD
Massachusetts Eye and Ear Infirmary, Boston, MA
Medical College of Wisconsin, Milwaukee, WI
Medical University of South Carolina, Charleston, SC
University of California-SD, San Diego, CA
University of Minnesota, Minnesota, MN
University of Texas Southwestern Medical , Dallas, TX
Inactive Laboratories (Not currently processing new temporal bone specimens):
Armed Forces Institute of Pathology,
Washington, DC
Baylor College of Medicine, Houston, TX
Columbia -Presbyterian Medical Center, New York, NY
Eye & Ear Institute of Pittsburgh, Pittsburgh, PA
Henry Ford Hospital, Detroit, MI
J. Hillis Miller Health Center, Gainsville, FL
University of Michigan, Ann Arbor, MI
New England Medical Center Hospitals, Boston, MA
New York University Medical Center, New York NY
Northwestern University Medical School, Chicago, IL
Otological Research Laboratories, Columbus, OH
Shea Clinic Foundation, Memphis, TN
University of Chicago, Chicago, IL
The University of Iowa Hospitals & Clinics, Iowa City, IA
University of Oklahoma Health Sciences Center, Oklahoma City, OK
University of Massachusetts, Worcester, MA
University of Wisconsin Hospital, Madison, WI
Wake Forest School of Medicine, Winston-Salem, NC
ABOUT THE TEMPORAL BONE
What is the Temporal Bone and where is it located?
The temporal bones form a part of the base of
your skull. They are among the hardest of all your bones, enclosing the tiny organs of your
hearing and balance systems.
What does the
Temporal Bone have to do with hearing and balance?
The temporal bone houses the delicate organs of
hearing and balance. When we refer to the temporal bone we are including not only the
actual bony tissue, but the middle and inner ear structures.
ABOUT TEMPORAL BONE DONATION
What is
Temporal Bone donation for?
In living people, is not easy to directly
examine the ear structures hidden deep inside the temporal bone. Studying donated temporal
bones after death is one of the best ways to learn about the causes of ear disorders, and
to devise new treatments and cures.
What does
Temporal Bone Donation involve?
Donation of one's temporal bones involves making a
pledge to one of the
active temporal bone
laboratories (see above) in the US, and informing one's next of kin and caretaker of
these wishes. Tissue donation requires the consent of the next of kin and it is he/she who
will notify the Registry of the donor's death and wish to donate tissue. The removal
occurs within 24 hours after death.
Who can donate their temporal bones? Anyone can donate their temporal bones, however, those with hearing or balance impairments are especially welcome as their donation will provide insight into the pathophysiology of their particular impairment.
Am I too old to be a temporal bone donor?
There is no age limit for donation.
Are donated
Temporal Bones used for transplant or research?
Donated temporal bones are not used for
transplantation. They are studying using a variety of techniques.
Who will benefit from Temporal Bone Donation?
Many people benefit from temporal bone donation.
While the donor is not directly affected by his/her own donation, future generations will
benefit from research performed and knowledge gained today. Likewise, today's generation
has benefited temporal bone research performed years ago.
How can donating
my Temporal Bones help solve hearing loss/balance impairment?
By studying donated temporal bones, researchers have gained new knowledge about hearing,
balance, and facial
nerve problems, and have developed effective new medical and surgical treatments. These
are the contributing steps to solving the mysteries of hearing and balance disorders.
Will I benefit from Temporal Bone Donation?
You will not be directly affected by his/her own
donation, but future generations will benefit from research performed and knowledge gained
today. Today's generation has benefited, however, from temporal bone research performed
years ago.
Why should I donate my Temporal Bones?
If you have a hereditary hearing or balance
impairment, then you may be concerned about the hearing of your children's children, and
their children. Or you may simply wish to help scientists and clinicians learn about
hearing and balance disorders so that children and adults in future generations may be
able to choose to treat their condition and restore or improve hearing or
balance.
Who will receive my Temporal Bones?
ABOUT THE PROCUREMENT PROCEDURE
Does removal of
the temporal bones change the donor's appearance?
No, there is no disfigurement after a temporal bone
removal. Many donors have open casket funerals.
Is there a cost to the donor's family or estate?
No, any costs associated with temporal bone removal
will be picked up by the laboratory receiving the pledge.
How does the
Registry learn of a donor's death?
The next of kin or caretaker calls the Registry
immediately (or as soon as possible) after the donor's death.
How soon after death must the temporal bones be removed?
The temporal bones must be removed as soon as
possible. Typically, they are removed within 24 hours.
How does the
decision to donate one's temporal bones affect one's funeral plans?
Funeral plans are typically not disturbed. The
temporal bones must be removed within 24 hours after death and there is no facial
disfigurement.
What is the role of my next of kin?
Your next of kin must give consent for the removal
of a donor's temporal bones. They will be the ones who will call the Registry at the time
of death.
Who should be notified of a donor's wish to donate their temporal bones?
The caretaker and next of kin must be aware of the
donor's wishes to donate. The funeral home or crematorium also should be informed.
Can I donate my
body to science for anatomical study and also donate my
temporal bones?
This depends mostly on the academic institution
receiving the whole body donation. Some whole body donation programs allow the temporal
bones to be removed and some do not.
Can I donate
other organs for transplantation as well as donating my
temporal bones for research?
Absolutely. Donation of organs for transplantation will simply be
performed prior to the temporal bone donation.