Give the Gift of Hearing and Balance

Histopathological studies of temporal bones and related brain structures donated after death by individuals with hearing or balance disorders can provide very valuable information about the causes and mechanisms of these disorders. 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. It has become apparent in the last several years that the functions of hearing and balance are controlled and determined by a large number of genes. Estimates range from 200 to more than 1,000 genes. It is difficult to extract DNA for genetic studies from temporal bones and related brain tissue; the DNA is often fragmented and contaminated during tissue processing. Therefore, it would be very valuable to obtain the DNA from a clean and uncontaminated sample to enhance the value of the temporal bone studies.

Individuals who are currently registered as temporal bone donors or those who are considering temporal bone donation are requested to also donate a sample of their DNA obtained by using sterile buccal (cheek) swabs. Cheek swabs will be sent by mail to donors. They are extremely easy 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 will be provided to send the brushes back to the Registry in the mail. DNA will be extracted upon arrival at the Registry at the Massachusetts Eye and Ear Infirmary, and will be stored in a deep freeze at -70°C.

There are virtually no risks of using the cheek swabs. The procedure is as simple and painless as brushing one's teeth.

Each donor's DNA sample will be coded. Then the DNA sample will be stored in a freezer at -70°C under this code and no DNA or genetic research will be done until the donor's death. After death when the temporal bones are obtained, the frozen DNA samples will be used only for research purposes, and only to investigate genes involved in hearing and balance. Results of this research may be presented or published for use by the medical or scientific community, but confidentiality of donors will be protected at all times. No identifying information will be made available to other physicians, researchers, insurance companies, or any other individual or agency, unless specifically requested by the donor prior to death in the form of a written, signed and confirmed release.

Participation in this study is entirely voluntary. A donor may choose not to donate his/her DNA from the cheek swab and instead to only donate the temporal bones and/or related brain structures. A donor may also withdraw from the study in the future by informing the Registry in writing, in which case his/her DNA sample will be destroyed. There will no cost to any donor for participating in this study.

If you would like to participate in the Registry's new DNA FROM BUCCAL (CHEEK) SWABS PROGRAM, please contact us by:

PHONE:    (800) 822-1327

FAX:          (617) 573-3838

EMAIL:      tbregistry@meei.harvard.edu

MAIL:          NIDCD National Temporal Bone Registry

                                      243 Charles Street

                                      Boston, MA 02114-3063

WEBSITE:     Click here 

                                        Fill in the online form with your name and address.  

                                        In the comments section, please note that  you would 

                                        like to enroll in the DNA FROM BUCCAL (CHEEK) 

                                        SWABS PROGRAM.