Education, Engagement & Counseling

The Education Working Group aims to foster community engagement in all aspects of the ClinGen project through education, outreach, and resource development.

Goals

  1. Create and maintain IRB submission toolkit for laboratories, researchers, and clinicians interested in submitting data to NCBI and other ClinGen resources.
  2. Create educational resources for the genomics community and the general public describing ClinGen initiatives and other aspects of the data sharing, access, and curation processes.
  3. Support the continued development of GenomeConnect, ClinGen’s patient-centered registry, in conjunction with the Phenotype Working Group.
  4. Create online presence through our website, clinicalgenome.org, and various social media outlets, including Twitter and Facebook.

Initiatives & Updates

  • GenomeConnect

    Visit GenomeConnect, a unique patient registry that allows individuals to share their genetic and health information with researchers, clinicians, and others.
  • Broad Data Sharing Consent

    The Education WG is developing a one-page consent form with supplemental online material to facilitate broad genomic data sharing in the clinical setting.
  • Videos

    Learn more about various aspects of ClinGen through the videos on our YouTube channel!  If you have a suggestion for a future video topic, please contact us at clingen@clinicalgenome.org.

Leadership & Members

Chairs
Coordinator
Members