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New Disease Registry Gives Patients Some Privacy

Thu, 03/14/2013 - 12:00am
Massachusetts Institute of Technology

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.

Reg4All’s emphasis on privacy controls and patient consent is unique. While many biobanks and DNA databases have participants sign broad consent forms that leave them little control over data, Reg4All allows patients to fine-tune how their information is used—sharing it with particular researchers, institutions, or people studying a specific disease. They will also be able to track who uses their data and how.

“The usual way of recruiting people is astoundingly bad,” says Sharon Terry, president and CEO of Genetic Alliance. It’s a challenge for researchers to locate qualifying patients through advertisements, and patients who might want to participate in a clinical trial must often wade through pages of technical descriptions on sites like clinicaltrials.gov, a website that serves as a national clearinghouse of ongoing medical trials. Furthermore, with drugmakers increasingly developing therapies targeted to smaller groups of patients, assembling enough of them has become harder.

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