How Patients Can Share Data

Learn about the process for individuals and patient groups to share data through GenomeConnect and by working with ClinGen.

For Individual Patients

Anyone who has had genetic testing or is the parent or guardian of someone who has had testing can join GenomeConnect, ClinGen’s patient registry! Anyone is able to enroll regardless of genetic test results or diagnosis.

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For Advocacy Groups & Patient Registries

ClinGen is working with existing registries and advocacy groups to offer their participants the option to share genetic and health data to help us understand the relationship between genetics and health!

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Why is Data Sharing Important?

When a laboratory finds a genetic change (variant) for the first time, often little is known about it. Even if a genetic variant is well understood, data sharing helps increase understanding of a condition’s features, which may help identify possible interventions and treatments. The more information collected, the better researchers will understand how genes affect health and, ultimately, how best to care for patients.

Individuals That Choose to Share Data Can:

  • Help clinicians, researchers, and other patients by increasing our understanding of their condition
  • Have the option to receive updates about their genetic test results from ClinGen 
  • Make a difference by helping others with the same condition get more definitive results from genetic testing