GenomeConnect is ClinGen's patient registry where individuals can securely share their genetic and health data which can used by researchers to better understand the relationship between genetics and health. Register: genomeconnect.org

A recent study published in nature Medicine has shown that gene therapy can be used to restore hearing in both ears of babies born with certain genetic causes of deafness. Learn more here: nature.com/articles/s4159…. #GeneChat #genetics

Clinical trials are research studies designed to answer specific questions about interventions, including new treatments. Interested in exploring if there are any clinical trials related to your genetic test results or diagnosis? Search here: clinicaltrials.gov

Learning and then sharing your family information with your doctors helps your doctors personalize a care and treatment plan for you. Read our recent article on #FamilyHistoryAwareness: bit.ly/49fXUEh.  #GeneChat

GenomeConnect celebrates its 10th anniversary. In the last 10 years, GenomeConnect has engaged over 10,600 patients in data sharing, has provided over 400 possible result updates to participants, and has shared over 4,700 variants with ClinVar with additional health data!

Over the summer, three new members joined the GenomeConnect Team! Meet the new members in this quarter’s newsletter: bit.ly/49fXUEh and learn about the GenomeConnect team here: bit.ly/3A4pmrz #GeneChat

What is #Pharmacogenomics? Pharmacogenomics combines pharmacology and genomics; to look at how your genes can influence your response to medication. Pharmacogenomics can help doctors prescribe medications that will be more effective. Read more here: bit.ly/3AcZeuB.

Happy New Year! Any changes to your genetic health over the past year? Don’t forget to log into GenomeConnect and update your profile. genomeconnect.org. Need help? Here are some instructions: bit.ly/4fzFPmt.

Check out this article published from the NIH about a new gene therapy delivery method that will promote advanced brain therapies!  bit.ly/4dJR2Qq #ScienceNews #Genetics

January is National Birth Defects Awareness Month! In some instances, birth defects can have a genetic component. Sharing health and genetic data can help better understand the genetic causes of birth defects. See resources provided by the CDC: bit.ly/3YgQf4O. #NBDAM

Scientists are researching how our genetics may influence our response to food. Nutrigenetics looks at how our genes impact nutrient absorption and nutrigenomics studies how diet affects gene expression and overall health. Read more: bit.ly/4dHwfgp #Nutrition #Genetics

Preparing for genetic counseling appointment? Bring a list of questions you may have, gather your family’s medical history, and provide any relevant medical records. Learn more about how to prepare for your appointment: bit.ly/4f7E3sZ

Have you uploaded genetic testing report to your GenomeConnect dashboard? Uploading a report will enable you to share your deidentified information with researchers and receive report updates. Check out this video for instructions: youtu.be/NxfhoOQERxY. #Datasharing #genetics

Classical Ehler’s Danlos syndrome (cEDS) is characterized by fragile skin and joint hypermobility. As more individuals share their genetic and health history with CEDS, we are learning more additional characteristics of this condition: bit.ly/401bDfT #DataSharing

By the end of 2024, over 11,151 individuals have engaged in data sharing through GenomeConnect and 4,722 variants have been shared with ClinVar. Thank you to all GenomeConnect participants for sharing your data! #genechat #datasharing

Today is World Cancer Day. Today aims to raise awareness about cancer and encourage its prevention. Did you know that 5-10% of all cancers are hereditary meaning they are caused by an inherited genetic change? Learn more here: bit.ly/3BGEfRW. #UnitedByUnique.

A recent review paper in nature examined the genes associated with atrial fibrillation (AF), a condition that is known to increase the risk of stroke and heart failure. Read more: bit.ly/40iD0Ra #genechat #HeartMonth

Heart Month is dedicated to bringing awareness to the importance of health. Genetic changes (variants) can increase an individual’s risk for certain cardiovascular disease. Learn more about cardiogenetics from a 2024 GenomeConnect newsletter: bit.ly/3TILf5E.  #OurHearts

Want to learn more about GenomeConnect? We recently provided a high-level overview during a virtual lunch and learn hosted by @NothingPink (nothingpink.org). Listen to the recording here: youtu.be/Egc08najiPM #datasharing #genechat