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New Disease Registry Gives Patients Some Privacy

A new venture lets patients choose how their data is used for medical research and offers sophisticated privacy settings.

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.

The registry builds on Genetic Alliance’s existing disease registry and biobank, which collects patient information and biomedical samples from patients with eight different diseases.

Genetic Alliance partnered with the company Private Access, which develops platforms for sharing health information while maintaining privacy; Genetic Alliance will hold user data stripped of identifying information, while Private Access controls a “privacy layer” that includes the key to identifying users and their preferences. When the full site launches on April 4, users will be taken through a sign-up process with health questions that adapt to an individual’s responses and gives instant feedback about how other people have answered the same questions. The software will also suggest qualifying studies to patients based on their updated health information.

Although the initial focus of the effort is getting patients into clinical trials, Reg4All will also continue Genetic Alliance’s previous work on building registries and biobanks of patient DNA and other samples for research on the causes of disease. Terry believes that having a wide variety of patients with different diseases will shed light on which diseases tend to overlap and which genetic or lifestyle factors are common to people who have them. She anticipates that researchers using the site will be evenly split between advocacy organizations, academic institutions, and companies.

Reg4All was funded in part by a $300,000 award from Sanofi US. Donna Cryer, president and CEO of the American Liver Foundation and one of the judges for the award, says, “I’ve never seen anything that created such a solution from the patient’s perspective.” Patients are largely unaware about the possibility of participating in clinical trials, she says. Cryer is now working on a pilot project to bring liver disease patients into the Reg4All system.

Krishanu Saha, a stem cell engineer at the University of Wisconsin-Madison who advocates giving patients more say in biomedical research, says that Reg4All represents a major investment in privacy controls as a way of expanding the interest in research. “Exploring the notion of privacy as not the same for everyone is an interesting concept,” he says. He also believes that people will ultimately be more interested in research when they get to control how it’s directed. “More than just disclosure, a true partnership would involve some sharing of power.”

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