The information on this page refers to the Sharing Clinical Reports Project, the clinician arm of Free the Data.

The Sharing Clinical Reports Project (SCRP) is a volunteer, grass-roots effort to encourage open sharing of genetic variant information. SCRP specifically aims to collect information on BRCA1 and 2 variants and make this information publicly available in the NCBI ClinVar database. SCRP is a component of the International Collaboration for Clinical Genomics (ICCG), a group of laboratories, physicians, genetic counselors, researchers, and others dedicated to raising the standard of patient care by improving the quality of genomic testing.

Free the Data aims to revolutionize how vital information is shared and accessed, in order to further translational research and advance clinical care towards lower costs, higher quality, and more efficient treatments. In addition to the educational materials that you give your patients who are about to have a BRCA1/2 genetic test performed (or have already had one), you can give them this one-pager, asking them to share their data. Alternatively, you can share the data for them.

Interested in receiving a free Free the Data outreach kit with materials to share with patients? Sign up here and we'll send you more information later this fall. Kits include downloadable one-pagers and email templates, printed business cards or postcards, and Free the Data pins to share!

For more information about SCRP, please visit the SCRP website or read the FAQ below.


The Sharing Clinical Reports Project: Frequently Asked Questions

Is such data covered by HIPAA?

Does sharing this data require IRB approval?

Do I have the right to release such de-identified data? Who owns test results?

Why are you collecting such limited phenotypic data?

How useful do you think such data will be since it is collected in a clinic rather than at random in the population?

Why are you focusing only upon BRCA1/2 in a period when sequences from entire genomes are currently being collected?