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New Disease Registry Gives Patients Some Privacy

Posted on March 15, 2013 by Dissent

Courtney Humphries reports on something that sounds really exciting:

As advances in genomics, molecular analysis, and data processing have propelled disease research forward, scientists and drug developers still face a formidable challenge: recruiting patients for their studies.

Genetic Alliance, a nonprofit that advocates for people with rare genetic disorders, is launching a new site called Reg4All that aims to entice more patients into clinical trials and disease research by giving them unprecedented privacy controls and greater say in how their data is used for research.

Read more on MIT Technology Review.

How simple. How constructive. I hope it lives up to its promise and potential.

Thanks to ITRC for pointing me to the article.


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