Will I be able to find out the results of the research?
Because we are a research laboratory and not a clinical laboratory with certified procedures for reporting patient results, we cannot directly release results from this study to you. If we obtain information that we think might be significant to your family, we may be able to have these results confirmed by a CLIA-certified clinical laboratory. A CLIA lab is a lab that is authorized to release results from patient tests for clinical and diagnostic purposes. There will most likely be a charge associated with this testing, which will vary depending on the laboratory. Most CLIA laboratories will ask for fresh blood samples in order to ensure the accuracy of the results. If your results were confirmed, they would be reported to your physician and made available to you with proper genetic counseling.

Our consent forms provide a space for the participant to indicate whether s/he wishes to be contacted about availability of results. If you choose to be contacted, you will be asked to provide the name of the healthcare provider we should contact to discuss making arrangements with a certified lab. We will make every reasonable effort to get in touch with the person you specify.

What if I do not want to be informed of my results?
Some individuals may want to contribute to research but do not necessarily want information about their own genetic status. Families have the option of participating in the study without finding the results. Our informed consent form has a space for the participant to indicate whether or not s/he wishes to be informed of any results from this study. If the participant checks "no", then we will not make any effort to contact the physician if we have results pertaining to the participant's family. However, if the participants are welcome to contact us to inquire about the general status of our research.

If genetics services, tests, or treatments are developed from this research, how will I be told about their availability?
If genetics services, tests, or treatments are developed from this research, a member of our study will make all reasonable efforts to contact participants, their referring physicians, and/or the information will be published and made available to the patient community through their personal physicians.