What is involved in study participation?
The first step in joining a genetic research study is to talk with one of the researchers about your family history. Family history information can usually be obtained during a telephone interview. Depending on the study design and the family history, we may request the participation of family members who have the study disorder as well as those who do not. With your written permission, we will request medical records pertinent to the study.
How will you obtain a blood sample from my family?
In some cases, researchers will travel to your home or another local meeting place to obtain blood samples and complete the necessary paperwork or examinations for the study. Another option is a kit sent through the mail. It contains tubes for blood collection and instructions that you will need to take to your local health care provider or laboratory to have blood drawn. The kits are sent back to the CHG at no charge the family.
Is there any cost to my family to participate in the study?
No, we do not charge families for participating in our studies. Any costs associated with having blood drawn or sent to our laboratory are paid for by the research study. However, the research project is not able to pay for the non-research related medical expenses of the participants or travel to have blood drawn.
Who may participate in the study?
Generally, any person with the specific study disorder and his or her family members may participate.
Will my family's medical history be kept confidential?
All personal and family medical history shared with the researchers is kept confidential. Records associated with the research are kept at the CHG in a locked room that has limited personnel access. These records are therefore kept separate from the medical records department at Duke University Medical Center.
Will my family receive results?
There are no individual results that can be shared with you or other study participants. Developing a diagnostic genetic test is one of the goals of each CHG study. Once such a test becomes available, then families who participated in the research will be given information on how to pursue such testing.