National Temporal Bone Registry
Donor Information and Enrollment
Becoming a Donor
The scientific study of your ears could be of great medical value whether or not you have any type of ear problem. The research that results from temporal bone donation has the potential to one day provide millions with the gift of hearing. Those who decide to donate their temporal bones may also consider donating the brain tissue related to hearing and balance to allow for even more research possibilities. As of today, more than 4,000 people are registered as temporal bone donors.
How to Enroll
- Contact the Registry:
- Call our 24-hour hotline 800-822-1327 (voice) or 888-561-3277 (TTY)
- Download the full Donor Enrollment Packet
- Return all completed forms to the address below and you will receive your wallet-size donor card stating you are a temporal bone donor.
National Temporal Bone Registry
243 Charles Street
Boston, MA 02114
- The Registry keeps a computerized record of all donations. We will forward a copy of your pledge to one of our collaborating laboratories, which will eventually receive your temporal bones for study.
- Tell your family and doctors about your plans to donate. Your next of kin makes the final decision about donation, therefore, make certain they know of your wish to donate your temporal bones. Please be sure they understand that their cooperation is needed at time of death.
*Please keep the Registry informed of any change of address or change in your next of kin.
Providing Your Medical Records
The scientific value of your temporal bone donation is greatly enhanced if it is accompanied by up-to-date medical records. Therefore, we encourage donors to send records of all hearing tests, balance tests, and ear surgery to the Registry. Researchers need your medical records to correlate and link your ear disorders to the changes they find in your donated temporal bones.
Collection of Temporal Bones
To ensure that your wish to donate your temporal bones is carried out, the Registry maintains a 24/7 nationwide network. Upon a donor’s death, the next of kin or healthcare provider notifies the Registry with a call to our toll-free hotline, 800-822-1327.
The Registry Coordinator will be notified and will make all of the arrangements for the temporal bone removal. No cost is incurred by the donor’s family or estate. The medical professionals who remove the temporal bones donate their time or are paid by the laboratory receiving the temporal bones. Removal of temporal bones (and brain) does not change the appearance of the head, face, or outer ear.
Useful LinksFind helpful information and resources.
- Read more
- Acoustic Neuroma Association (ANA)
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- AG Bell
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- American Academy of Audiology
The Academy offers a consumer guide for hearing loss with information about audiograms and purchasing hearing aids.
- American Academy of Otolaryngology—Head and Neck Surgery
The Academy offers consumers a way to search for audiologists in their city and state.
- American Association of the Deaf-Blind
A national, non-profit organization, by and for people who experience both vision and hearing losses, and those who support them.
- American Auditory Society
Aims to increase knowledge and understanding of the ear, hearing, and balance and related disorders; preventions of these disorders; and habilitation and rehabilitation of individuals with hearing and balance dysfunction.
- American Brain Tumor Association
A non-profit, independent organization existing to eliminate brain tumors that serves individuals globally and awards funds to researchers throughout the United States and Canada.
- American Hearing Research Foundation
This foundation serves two vital roles: to fund significant research in hearing and balance disorders and to help educate the public.
- American Society for Deaf Children
This national, independent non-profit works to empower parents of deaf and hard of hearing children by advocating for the highest quality services and programs.
- American Speech-Language-Hearing Association
Here, find information and resources regarding speech and language disorders, hearing loss, and other related disorders.
- American Tinnitus Association
This non-profit is the nation’s foremost organization working to cure tinnitus.
- Association of Research in Otolaryngology
This international association of scientists and physicians is dedicated to scientific exploration among all of the disciplines in the field of otolaryngology. Research efforts involve the ear, nose, head, neck, and related functions including hearing, balance, speech, taste, and smell, among others.
- Better Hearing Institute
Here, you can find comprehensive information on hearing loss, tinnitus, and hearing aids, as well as a directory of hearing care providers (audiologists, hearing instrument specialists, and otolaryngologists).
- Body Donor Programs in the U.S.
This site provides a listing of whole body donor programs across the United States.
- Boys Town National Research Hospital
This hospital provides nationally oriented clinical and surgical services with research programs focusing on childhood deafness, visual impairment, and communication disorders.
- Canadian Hard of Hearing Association (CHHA)
Run by and for individuals who are deaf and hard of hearing, this organization advocates for hearing issues and solutions.
- Canadian Hearing Society
Offers workshops in speech reading, communication, and sign language, as well as provides general information on deafness.
- Center for Hearing and Communication
Provides unsurpassed hearing health care for infants, children, and adults with hearing loss and auditory challenges.
- Central Institute for the Deaf
A healthcare directory on the web maintained by Washington University in St. Louis.
- Cochlear Implant Awareness Foundation (CIAF)
A non-profit organization aiming to raise awareness about how cochlear implants restore sound for the hearing impaired, providing cochlear implant equipment to qualified applicants.
- Cranial Base Center
Provides a complete range of services for the diagnosis, treatment, and rehabilitation of patients with cranial base lesions.
- Described and Captioned Media Program
Promotes and provides equal access to communication and learning for students who are blind, visually impaired, deaf, hard of hearing, or deaf-blind.
- Ear Institute of Chicago
Website devoted to people with hearing loss, as well as their family and friends.
- Ear Surgery Information Center
Offers information on various subjects relating to hearing.
- ENT Journal
Links to patient educational information, ENT associations, and ENT publications.
- Hands & Voices
A parent-driven, national non-profit organization working to improve educational and social outcomes for children who are deaf or hard of hearing so they can achieve their highest potential.
A practical sign language dictionary online.
- Harvard Medical School Center for Hereditary Deafness
Brings researchers, clinicians, and families together to better understand hereditary hearing loss.
Online resource with information about topics such as ear infections and hearing loss.
- Healthy Hearing
This online guide offers information on hearing loss, hearing aids, cochlear implants, tinnitus, and more.
- Hearing Health Foundation
Supportive community for people with hearing loss, parents of deaf and hard of hearing children, and professionals who work with them.
- Hearing Health Magazine
Online magazine designed for people who experience any degree of hearing loss, tinnitus, or other ear disorders.
- Hearing Loss Association of America
Exists to open up the world of communication for people with hearing loss through information, education, advocacy, and support.
- Hearing, Speech and Deaf Center
Aims to enrich the lives of all adults and children who experience hearing loss, speech and language impairments, or who are deaf, by providing professional services and technology and by promoting community awareness and accessibility.
This is an international, non-commercial website providing a wealth of unbiased, general information about hearing loss.
- Helen Keller National Center
A national rehabilitation program serving youth and adults who are deaf-blind.
- Hereditary Hearing Loss Homepage
Features research into hereditary hearing loss.
- House Ear Institute
Helps define the causes of hearing and balance disorders, and improve medical/surgical procedures and prosthetic devices.
- John Tracy Clinic
This private, non-profit education center provides free, parent-centered services worldwide to families of infants and preschool children who are deaf or deaf-blind.
- Maryland Hearing and Balance Center
Provides specialty care for patients with problems related to the ears, facial nerve, and skull base.
- Ménière’s Disease: American Academy of Otolaryngology
Information about Ménière’s Disease.
- Ménière’s Disease: Information Page
This site is maintained as a non-profit public service to provide information and support regarding Ménière’s Disease.
- National Association of the Deaf (NAD)
Promotes, protects, and preserves the rights and quality of life of deaf and hard of hearing individuals in the United States.
- National Center for Hearing Assessment and Management (NCHAM)
Assists hospital-based Universal Newborn Hearing Screening and state-based Early Hearing Detection and Intervention (EHDI) programs to ensure that all infants are screened for hearing loss at birth and receive timely and appropriate diagnostic and intervention services.
- National Center on Deaf-Blindness
Works to improve the quality of life for children who are deaf-blind and their families.
- National Cued Speech Association
Offers information, support, and advocacy for those interested in learning about and using cued speech as a communication alternative.
- National Funeral Directors Association
Continuing education audiocassettes for funeral directors and associated professionals addressing temporal bone removal and embalming implications.
- NIDCD (National Institute on Deafness and Other Communication Disorders)
This institute is the federal government’s focal point for biomedical and behavioral research in human communication, and supports and conducts research on the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. The Temporal Bone Registry is a program of the NIDCD.
- National Organization for Hearing Research Foundation
Funds and supports research into the causes, preventions, treatments, and cures of hearing loss and deafness.
- National Organization for Rare Disorders
A patient advocacy collaboration of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities.
- OHSU Ear, Nose & Throat
Website offering information on different methods of treatment for tinnitus.
- PathServe Autopsy and Tissue Bank
This is a tissue supplier for bioresearch and educational institutions.
- Reviews Tutoring Guide for Students With Disabilities
Reviews created an in-depth tutoring guide designed specifically to help students living with disabilities who may have a harder time in a larger classroom setting. This comprehensive guide covers the benefits of tutoring and resources that are available.
This is an online group of more than 200 late deafened and hard of hearing and other interested folks who provide support and encouragement to each other through email.
- Science Care
Accredited by the American Association of Tissue Banks for the procurement and distribution of non-transplantable organs, tissues, and the whole body for medical research and education.
- Scientific Learning
The Fast ForWord Family of Programs™ develop the critical thinking, listening, and reading skills that are necessary for success in the classroom, the workplace, and in everyday life.
- The EAR Foundation
Working to educate the public and the medical profession in matters of hearing loss and disease of the ear and to sponsor basic clinical research into hearing and balance disorders.
A wide range of topics are covered on this website, providing information on publications, hearing associations, and research.
- Vestibular Disorders Association
A non-profit organization dedicated to serving people with inner ear balance disorders.
- Acoustic Neuroma Association (ANA)
The Registry is supported by NIH Cooperative Agreement U24DC013983 from the National Institute on Deafness and Other Communication Disorders.
Tel: 800-822-1327 | TTY: 800-439-0183 | Fax: 617-573-3838 | firstname.lastname@example.org