After signing up for GenomeConnect, you can continue to participate in a number of ways. 

1. Connect with Other Participants: 

  • You can choose to connect with other participants based on gene, diagnosis, or US State using the "Matching Feature" in your GenomeConnect profile. 
    • To ensure that your gene is added to our searchable list, we ask that you  upload a copy of your genetic testing report to your online account. Please be sure to include all pages of the report.  Including all of the pages and all four corners of each page helps the GenomeConnect staff make sure that we can collect all of the information about the genetic testing results. A short video on how to upload his results can be found here. If you no longer have a copy of your report, our team can help you request one.
    • Currently, 13% of participants can match based on gene! If you have not 

2. Update Your Health History and Complete Additional Surveys: 

  • You should update your health history each year or as your health changes. As we work to understand the relationship between genetics and health, the only way to learn more is by gathering information from as many people as possible, in a way that can be shared. The more information collected, the better we will understand how genes affect health and, ultimately, how best to care for patients.
  • Based on your initial health survey responses, you may be assigned additional, optional surveys in your GenomeConnec account. Completing these surveys can help GenomeConnect capture a more detailed picture of your health. 

3. Learn About Relevant Research Opportunities: 

  • GenomeConnect also facilitates matching between individuals and researchers to advance genomic medicine. If a researcher wishes to connect with GenomeConnect participants based on gene, disease, or variant, GenomeConnect staff review the request and relay this invitation along to appropriate participants. If you are interested in participating in additional research, you can contact the researcher directly. Contact information of GenomeConnect particpants is never shared with external researchers. 

4. Have the Option to Receive Updates About Your Genetic Test  Results: 

  • Over time, as we learn more and more about genetic changes, interpretations may change.  For example, a genetic change laboratories once thought was a “Variant of Uncertain Significance” can be changed to “Pathogenic,” or disease-causing based on new evidence.
  • When genetic test results are updated, some genetic testing laboratories will issue a new report to the doctor or genetic counselor that ordered the testing. Not every laboratory does this, however, and some healthcare providers ask that patients check-in regularly about their results.  You should always follow-up with a healthcare provider to discuss any updates to your/your child’s genetic testing and how this may impact your/your child’s care.  We recognize, however, that remembering to do this can be difficult.
  • GenomeConnect may be able to help provide information about any updates if the registry learns of them. If you choose to receive updates and GenomeConnect learns of an update, we will alert you via email that there may be an update and refer you to your doctor or another healthcare provider in your area to discuss any potential updates. You choose whether you want to recieve these updates in your GenomeConnect account under "Contacting and Sharing" preferences.