Don't let Myriad keep a monoploy on the data!

lekker

I tested negative for any BRCA mutations, but I wanted to pass along the following information for you to consider.  Even though some of Myriad's patents were struck down and other labs can now test for BRCA mutations, Myriad has kept all of the data collected since 2004 away from other researchers and they have no plans to release the information.  Finding a mutation is only the first step - it is analyzing that mutation compared to others with the same mutation to see if it causes increased cancer risk that can direct treatment choices.  A doctor at UCSF realized that the patients themselves have this information and therefore can choose to share it (anonymously) in the hopes that researchers around the world can use it.  Dr. Nussbaum teamed with other volunteers to create a website that explains their mission and how you can submit your results: http://sharingclinicalreports.org/  And here's a New York Times about their endeavor: http://www.nytimes.com/2013/04/13/health/dna-project-aims-to-make-companys-data-public.html?pagewanted=all&_r=0  

I love the closing line from the NYT article in reference to Myriad's assertion that their database of patient information is a trade secret (quoted from the fund manager in Boston who's underwriting financial incentives for clinicians to submit data) - “That works for Coke, not for cancer.”

ladieesnapps

I found this database a coupke months ago but thank you for sharing the info!

Michele2013

It is saying this website does not exist.

guineamom

There are some weird chars if you just click on the URL. Either get rid of the "/ " or try this -- http://sharingclinicalreports.org

fredntan

Do they need brca neg reports?

lekker

I think they're only collecting mutation data. If your report said "no mutation found" they wouldn't need to know that. If a mutation was found, they want to know what the mutation is and whether it was classified harmful/deleterious, unknown or harmless/benign.





From the website http://thednaexchange.com/tag/nussbaum/



This project is limited to collecting information on the variant, identifying it using cDNA and/or genomic numbering, and its classification in a 3-tier scale as benign, pathogenic/deleterious or unknown (some reports use a 5-tier scale including possibly benign and possibly pathogenic, which is also good). The goal is to capture each variant one time per family.