Participating in GenomeConnect is relatively simple. Learn more about how you can get started or sign-up by visiting the GenomeConnect homepage.

GenomeConnect Initial Health Survey

Our online health survey is designed to capture a snapshot of participant's overall health. We want to know as much as we can about their health, from their head to their toes! Questions are organized by body system (digestive system, immune system, cardiovascular system, etc.), and participants can skip any questions they do not feel comfortable answering. Participants are asked to update this each year or as anything changes with their health. Additionally, depending on their answers to this survey, they may be asked to complete follow-up surveys in the future if we need more information about any of their specific health issues.

GenomeConnect Consent Form

Review the GenomeConnect consent form. If you are interested in participating in GenomConnect, this consent form can be completed online at

GenomeConnect Sample Wording

We encourage clinicians and laboratories to add wording about GenomeConnect into testing reports, patient letters, and any other materials sent to patients. We have provided different wording options so that you can select the wording that works best for your practice and/or laboratory.

GenomeConnect One Page Recruitment Flyer

One page informational handout summarizing participation in GenomeConnect.

GenomeConnect's Most Recent Newsletter

Read our participant update, learn more about diagnosing rare genetic diseases, we have answers to the questions you have been asking, and meet our newest team members!