We encourage clinicians to copy and paste wording about
GenomeConnect into clinical and lab reports, patient letters, and any
other materials sent to patients. We have provided different wording
options so that you can select the one that works best for your practice. If
you decide to “tweak” the wording, it is acceptable as long as the
message and content remain consistent and accurate. If you would like us
to review your wording, please send it to Brianne Kirkpatrick, the
GenomeConnect Coordinator, at info@genomeconnect.org.
Samples of a brief explanation about GenomeConnect:
1) An online research opportunity called GenomeConnect is available for the
recipient of this genetic test to advance knowledge of genetic variants by
sharing de-identified genetic and health information. Please visit
genomeconnect.org to learn more.
2) Visit genomeconnect.org to anonymously share your genetic information
and help advance knowledge about genomic variants.
3) GenomeConnect is an NIH-funded online patient portal supported by the
Clinical Genome Resource (ClinGen) project. Patients willing to share their
genetic and health data (de-identified for privacy) to advance knowledge
about their genetic variants and to connect with others with the same
variant/condition can visit genomeconnect.org or email the coordinator at
info@genomeconnect.org to learn more.
4) An online research opportunity called GenomeConnect
(genomeconnect.org) is available for the recipient of this genetic test to
advance knowledge of genetic variants by sharing de-identified genetic and
health information.
5) An online research opportunity called GenomeConnect
(genomeconnect.org) is available for the recipient of this genetic test. This
patient registry collects de-identified genetic and health information to
advance knowledge of genetic variants.
A longer, more detailed explanation about GenomeConnect:
GenomeConnect is “Partnering with YOU to advance genomic health”!
Patients undergoing genetic testing can help improve the quality of genetic
testing and a doctor’s ability to understand the results by registering at
GenomeConnect, an online community designed to increase our
understanding of genetic variants, allow patients to connect with other
individuals with the same genetic changes and connect patients to research
opportunities. GenomeConnect is an NIH-funded online patient portal
supported by the Clinical Genome Resource (ClinGen) project.
Participation is open to patients who have had genetic testing and their family
members and is accomplished entirely online using a computer, smartphone
or tablet. Participants sign up through a secure portal, complete a general
health survey and upload a copy of their genetic test report. Genetic variants
on the report are de-identified by GenomeConnect staff before the
information is transferred to ClinGen-approved variant databases. Participants
will receive updates in their individual accounts when there is a potential to
make connections with other GenomeConnect participants with the same
condition, gene, or genetic variant and/or research studies.
Visit genomeconnect.org or email info@genomeconnect.org for more
information!