Participants are given the option of whether or not they would like to be contacted with the results of the project. In the event that the researchers obtain information that they think may be relevant to you / your child, you will be informed that a preliminary finding has been obtained. Government guidelines require confirmation of research results by a certified clinical laboratory (CLIA certified). Most CLIA laboratories will ask for a fresh blood sample in order to ensure the accuracy of the result. If your results are confirmed, they will be made available to you with proper genetic counseling. Only with your permission will information be made available to others.
There is generally a laboratory charge for CLIA testing which you may submit to your health insurance plan. If you choose this option, the results will become part of your / your child's permanent medical record. Information contained in your / your child's medical record may not be given to anyone unaffiliated with Boston Children's Hospital in a way that could identify you / your child without written consent, except as required or permitted by law.
There is a reasonable possibility that no findings will result from this research effort. If findings are detected, it may be years before the utility of these findings, if any, are realized.
