| HISTORY
of the Temporal Bone Registry
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 at one of four regional centers. Nearly 6,000 individuals enrolled as donors over
the years. However, due to rising costs and dwindling funds the number of active temporal
bone collections and the number of active investigators in the area of temporal bone
research declined. The NTBB became virtually inactive in the late 1980’s.
In July, 1988, a workshop co-sponsored by
National Institute of Neurological and Communication Disorders and Stroke (NINCDS) and the
DRF reaffirmed the importance of temporal bone collection, and September 30, 1992, the
National Temporal Bone Hearing and Balance Pathology Resource Registry was established by
the
National Institute on
Deafness and Other Communication Disorders (NIDCD).
The Registry would assume the responsibilities of the previous NTBB and, most importantly,
to ambitiously add to the objectives in order to provide a more effective temporal bone
network.
SERVICES AND FUNCTIONS OF THE REGISTRY (Missions)
The contract of the Registry was awarded to
the
Massachusetts Eye and Ear Infirmary, and
the Deafness Research Foundation in by NIDCD. The purpose of the contract was to rejuvenate
interest in research in the human temporal bone by
establishing a computerized database of
human temporal bone collections,
proactively responding to inquiries from the
public and researchers interested in temporal bone donation or research,
dissemination of information about the human
temporal bone collection, its importance for otologic practice,
the implementation of professional
educational activities in the field of human temporal bone and auditory brain stem study,
the conservation of otopathologic
collections at risk of being lost and, finally,
he development and implementation of a
national acquisition network to increase the yield of human temporal bone and brain tissue
from donors.
LOCATION
The former NTBB was
restructured as the Registry’s National Temporal Bone Donor Program.
The new temporal
bone donor program has been significantly improved over the NTBB. For example, the old
program consisted of four regional centers that maintained donor pledges and medical
records, received the donated bones and then distributed the materials to regional
laboratories for processing. The Registry has now centralized the enrollment and donation
process within our national office at the Massachusetts Eye and Ear
Infirmary in Boston. The address
is:
NIDCD National Temporal
Bone Registry
Massachusetts Eye & Ear Infirmary
243 Charles Street
Boston, MA 02114-3096
(800) 822-1327
24-HOUR TOLL-FREE HOTLINE - (800) 822-1327
A principal objective in responding to
information inquiry is to further temporal bone donorship and procurement and to respond
to requests for database searches by scientific investigators. Non-emergency
inquiries by donors, scientists, and anyone else wishing to learn more about temporal bone
donation or research, may contact the Registry by phone (toll-free number or TDD number),
by fax, by email or by post (see
Contact Information
at
the bottom of each page). Emergency requests, including temporal bone procurement help,
are received through a 24-hour toll-free hotline which at off-hours is handled by an
on-call beeper system.
To ensure that our donors' wishes to donate
their temporal bones is carried out, the Registry maintains a 24 hour-a-day phone line to
receive calls regarding a donor's death, and a 24 hour-a-day nationwide network to remove
donated tissues. Upon a donor's death, the next of kin or health care provider notifies
the Registry with a call to our toll-free hotline,
(800) 822-1327, 24 hours a
day. The Registry Coordinator then makes all the arrangements for temporal bone removal.
The Registry's toll-free hotline was
established not only to facilitate the acquisition of temporal bone specimens, but to
encourage general inquiries from the public and donors. Donors are strongly encouraged
to contact the Registry
with questions, comments and most
importantly, with updates when they relocate or when a designated next-of-kin changes.
24-Hour Toll-Free
Hotline:
(800) 822-1327
In Boston: (617) 573-3711
TTY: (617) 573-3888 - Toll-Free TTY: (888) 561-3277
Fax: (617) 573-3838 |
