ClinGen believes that de-identified genomic data should be freely available and publicly accessible through resources such as NCBI's ClinVar database. Follow the links below to learn more about how ClinGen can help you submit your data to ClinVar.
ClinVar, a publicly available database hosted by the National Center for Biotechnology Information (NCBI) aggregates information about sequence variation and its relationship to human health. Click here to learn more about the database and how to use it.
ClinGen encourages the responsible sharing of phenotypic data from laboratories and clinicians. Learn more about resources available to facilitate the collection of phenotype data in structured formats.
Genomic data sharing between clinicians, laboratories, and patients is essential for improvements in genomic medicine. The need for broad access to data, however, must be balanced with the need to respect patient autonomy and privacy, and consent should be obtained before sharing individual-level data. To facilitate this process in the clinical setting (where time and resources have historically been limited), we have developed broad data sharing consent resources for use by clinicians and clinical laboratories.
All resources are available in English, French, Spanish, and Mandarin Chinese.
The information on this website is not intended for direct diagnostic use or medical decision-making without review by a genetics professional. Individuals should not change their health behavior solely on the basis of information contained on this website. If you have questions about the information contained on this website, please see a health care professional.