Documents
Participating in GenomeConnect is relatively simple. Learn more about how you can get started or sign-up by visiting the GenomeConnect homepage.
Current Participation
This document provides a high-level summary of GenomeConnect's data sharing efforts including participation via GenomeConnect and data sharing partners. These statistics are updated quarterly. The last update was March 31, 2025.
GenomeConnect Surveys
GenomeConnect occasionally makes updates to their surveys. All shared surveys have a version number and date in the footer to ensure you are referencing the most recent survey. We have also partnered with other groups to aid in the translations of some of these surveys. Please email info@genomeconnect.org if you would like additional information
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All participants are encouraged to take our health survey, which is designed to capture a snapshot of participant's overall health. 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.
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This subsurvey is assigned to participants who indicate a diagnosis/history of neurodevelopmental and/or behavior differences on their initial survey. The survey intends to collect additional information about the participant's motor, language, and behavior development. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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This subsurvey is assigned to participants who indicate a diagnosis/history of neurodevelopmental and/or behavior differences on their initial survey. The survey intends to collect additional information about the developmental services the participant has received. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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This subsurvey is assigned to participants who indicate a diagnosis/history of cancer. The survey intends to collect additional information about the participant's diagnosis of cancer and care. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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This subsurvey is assigned to participants who indicate a diagnosis/history of arrhythmia. The survey intends to collect additional information about the participant's diagnosis of arrhythmia, treatments, and care. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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This subsurvey is assigned to participants who indicate a diagnosis/history of a heart defect on their initial survey. The survey intends to collect additional information about the participant's diagnosis, treatments, and care. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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This subsurvey is assigned to participants who indicate a diagnosis/history of cardiomyopathy. The survey intends to collect additional information about the participant's diagnosis of cardiomyopathy, treatments, and care. The linked survey is in English. The survey is also available in Spanish. Please contact our team at info@genomeconnect.org should you be interested in translations of the survey.
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June 10, 2025 - This subsurvey is assigned to participants who indicate a diagnosis/history of a seizure on their initial survey. The survey intends to collect additional information about the participant's diagnosis, treatments, and care. The linked survey is in English. The health survey has also be translated into Spanish by the GenomeConnect team and, thanks to CombinedBrain, into several other languages including Italian, French, German, Hebrew, Korean, and Brazilian Portuguese. Translations can be requested by contacting info@genomeconnect.org.
GenomeConnect Consent Forms
Review the GenomeConnect consent form. If you are interested in participating in GenomeConnect, this consent form can be completed online at genomeconnect.org.
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English
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Spanish
Additional Resouces
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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.
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One page informational handout summarizing participation in GenomeConnect.
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One page informational handout summarizing participation in GenomeConnect in Spanish