BRCA1, familial breast-ovarian cancer susceptibility 1
How do I become involved in "free the data"
The "Free the Data" movement is a grassroots initiative which asks people who have had genetic testing for the BRCA1 and BRCA2 genes to share their results and health information with the "Free the Data" team so that they can enter them into ClinVar, an open-access database of mutations run by the NIH in order to gain a better understanding of hereditary breast and ovarian cancer. This step is important as not all testing laboratories enter their information into confidential, but publicly accessible databases like Clinvar where researchers can use them.
The goal of the "Free the Data" movement is to understand more information about mutations and variants of unknown significance (VUS) in BRCA1 and BRCA2. This information will hopefully help doctors find better treatment options for those with those mutations.
Over time, the campaign hopes to expand to encompass all genes and all mutations, powering new research and better health for all.
To learn more about "Free the Data" and ClinVar there is information through the NCBI.
SOURCE: Emory University - Department of Human Genetics in collaboration with ThinkGenetic • https://www.thinkgenetic.com/diseases/brca1-familial-breast-ovarian-cancer-susceptibility-1/organizations/58919 • DATE UPDATED: 2019-07-09