The Vanderbilt Center for Human Genetics Research is committed to understanding how diseases are inherited and figuring out ways to treat and/ or prevent these diseases. There are several ways that you can help defeat genetic diseases:
- Volunteer: We are always in need of additional help in the office to organize files, make copies, type letters, and help out in other general ways. If you are interested in volunteering, you can contact Andrea Donald at 615-343-5851 or through e-mail.
- Join a support group: Sometimes patients and families have no one to turn to for information and long-term emotional and social support. For many diseases, local chapters of national support organizations exist, and we can help you identify them. If no such organization exists in your area, you may want to help organize one.
- Get involved: We welcome family participation in our research studies. Without such involvement, our efforts to understand and better treat diseases are impossible. Families are essential to all the research being done.
We try to make participation easy for families. Usually, information and sample collection is done outside of Vanderbilt University Medical Center. Information may be obtained over the phone or through mail. In working with a family, we usually start by gathering family history information. For some family members, a brief clinic examination specific for the disorder being study may be performed, and/or medical records may be obtained. We also need a one-time sample of blood from some relatives. We may also ask family members to fill out a questionnaire about medical background or environmental exposures.
All information provided to the researchers at the CHGR is considered confidential medical information, including family histories. Therefore, all information on individuals, as well as on the family, is kept confidential and separate from medical records.
There is no charge for participating in studies being done at the CHGR. The program has a policy not to release any individual results, but we do keep in contact with families through newsletters that provide updates on research progress. We feel that it is very important to keep families informed about our studies, since they are the people who make our research possible.
To view open studies, click here. |