What Is The Australian Temporal Bone Bank?
The Australian Temporal Bone Bank (ATBB) is the first temporal bone bank in Australia and the only one in the world to specialise in balance disorders, with a joint interest in conditions that effect hearing.
The ATBB seeks the donation of the temporal bone after life from patients with a clinical balance and/or hearing disorder, or a cochlear implant. The aim of the Bank is to further medical knowledge of diseases that effect balance and/or hearing, including the effect of cochlear implantation, in an effort to improve medical treatment.
Housed in the Royal Victorian Eye and Ear Hospital, the ATBB is a joint initiative between the Hospital and the University of Melbourne’s Department of Otolaryngology. The ATBB was established after a successful collaboration between the Hospital and the National Temporal Bone Registry at the Massachusetts Eye and Ear Infirmary and Harvard Medical School, Boston, USA, which demonstrated the substantial benefits and insights offered by temporal bone pathology.
As many balance and hearing disorders also involve the brain, if a donor also agrees to donate their brain it will aid more complete research into these disorders.
Donors are also asked to provide up-to-date medical records to enhance the scientific value of their temporal bones. If this is agreed to, then the ATBB are able to coordinate the gathering of this information on behalf of registered patient donors.
The ATBB’s brochure can be downloaded here.
Who Can Donate Their Temporal Bone?
Any person with a balance disorder and/or hearing disorder, or cochlear implant is eligible to register as a donor with the ATBB.
How Is The Temporal Bone Collected?
As the temporal bone is deep within the skull, it can only be examined by removing it from deceased donors. To conduct this type of research, a small part of the temporal bone – only that containing the middle and inner ear – is surgically removed soon after life, without impacting the donor’s appearance.
The structures of the inner ear can then be prepared for a variety of research techniques, including microscopic study and procedures that allow identification of balance and hearing defects at a molecular level.
Researchers study both a donor’s temporal bone as well as their medical records, and examine each sample to learn more about the ear structure and cause of the donor’s ear and/or balance disease. With this knowledge, researchers can develop new ways to diagnose and correct ear and/or balance diseases in others. By studying temporal bones, researchers have gained new knowledge about hearing, balance and facial nerve problems, and have developed effective new medical and surgical treatments, in order to help patients with the same conditions.
Histopathological studies (changes in tissues caused by disease) of temporal bones and related brain structures donated after life by individuals with balance and/or hearing diseases can provide very valuable information about their causes and mechanisms. The utility of such studies can be enhanced even further by combining the histopathological analysis with DNA studies of genes involved in hearing and balance. The functions of hearing and balance are controlled and determined by between 200 to over 1,000 genes. Individuals who are registered as temporal bone donors or those who are considering temporal bone donation are requested to also donate a sample of their DNA, which will be used to help understand if there is a genetic component to the balance/hearing disorder. DNA is obtained by using sterile buccal (cheek) swabs, which are sent by mail to donors. They are extremely easy and painless to use – the sterile brush at the end of the swab is rubbed against the inside of the cheek back and forth several times just like a toothbrush. The brush is placed back in the sterile container, and a prepaid envelope is provided to send the brushes back to the Murdoch Childrens’ Research Institute in Melbourne via mail. DNA will be extracted upon arrival at the Murdoch Children’s Research Institute. There are virtually no risks of using the cheek swabs.
If the donor has requested during their lifetime in the form of a written, signed and confirmed release of information that results be provided to their family members, this will be provided. If a donor’s condition(s) is found to be genetic, then their siblings and/or children may have the opportunity to receive early detection, diagnosis, and treatment, which may be life-saving, and quality of life enhancing.
Participation in the research is entirely voluntary. A donor may choose not to donate his/her DNA from the cheek swab and instead to only donate their temporal bones and/or related brain structures. A donor may also withdraw from the research study in the future by informing the Bank in writing, in which case his/her DNA sample will be destroyed. There will be no cost to any donor or their family for donating the temporal bone and participating in the research.
If you have further questions, please email the Society at firstname.lastname@example.org
The Australian Temporal Bone Bank and the Temporal Bone Donor Society Inc are extremely appreciative of the support received from the National Temporal Bone Registry at the Massachusetts Eye and Ear Infirmary and Harvard Medical School, Boston, USA.