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NATIONAL TEMPORAL
BONE AND RELATED
BRAIN TISSUE DONOR PROGRAM
In 1960, the National Temporal Bone Banks Program
(NTBB) was
established by the Deafness Research Foundation to encourage individuals with ear
disorders to pledge their temporal bones at death to scientific research. Nearly 6,000
individuals enrolled as donors over the years. However, due to rising costs and dwindling
funds, the NTBB became virtually inactive in the late 1980’s. Recognizing the
importance of temporal bone research, in 1992 the National Institutes on Deafness and Other
Communication Disorders (NIDCD) of the National Institutes of Health, established the
NIDCD National Temporal Bone Registry. The former NTBB was restructured and is now part of
the NIDCD National Temporal Bone, Hearing and Balance Pathology Resource Registry.
The new temporal bone donor program managed by the Registry
has significant improvements over the NTBB. The old program consisted of four regional
centers that maintained donor pledges and medical records separately, received the donated
bones and then distributed the materials to regional laboratories for processing. The
Registry has a centralized enrollment and donation process within the national office at
the Massachusetts Eye and Ear Infirmary in Boston. All temporal bone pledges come through
the Registry’s Boston office.
Once an individual completes a bequest by returning the
completed donor enrollment forms to the Registry’s Boston office, the pledge is
entered into a central database, and then assigned to one of the 15 active collaborating laboratories around the
country. Pledges are forwarded to the active temporal bone lab closest to the residence of
the donor. Each laboratory maintains up-to-date medical histories for later comparison
with the microscopic findings in the corresponding procured temporal bones. The new
program encourages donors to bequeath brain tissue related to hearing and balance in
addition to their temporal bones. The study of the brain pathways involved in hearing and
balance provides valuable information about brain disorders that can also cause deafness,
imbalance and dizziness, e.g., multiple sclerosis, tumors, infections.
Brochures describing the
Registry and the Temporal Bone Donor Program are available free of charge to potential
donors, clinicians, researchers and deaf and hard-of-hearing organizations. See
Publications/Brochures to read about and order the brochures.
TEMPORAL BONE PROCUREMENT NETWORK
In addition to the Registry's national donor
program, a national tissue procurement network has been established. This network has been
organized in conjunction with collaborating temporal bone laboratories, hospital pathology
departments, organ procurement organizations, and the National Disease Research
Interchange (NDRI) and its network of 200 organ procurement organizations. Since January
1, 1993 to September, 1995 the Registry has successfully collected 183 temporal bones and
60 brain specimens. These specimens were sent for processing to the member laboratories.
The national temporal bone procurement network has at its core a 24-hour toll free
telephone number and on-call beeper system, useful when identitifying an appropriate
procuring agency. The costs associated with removal of temporal bones, brain tissues and
transportation of donated tissue, ranging from $50-$360, is born by the recipient
laboratory and there is no cost to the family or estate of the donor.
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