Disease Registry To Let Patients Control How Their Data Are Used

Genetic Alliance -- a not-for-profit advocacy organization for individuals with rare genetic health conditions -- is launching an online disease registry that gives patients unprecedented control over how their data are used in an effort to boost participation in medical research and trials, MIT Technology Review reports.

The registry -- called "Reg4All" -- is expected to launch April 4. It was funded in part by a $300,000 award from Sanofi.


Medical researchers can find it challenging to locate qualifying patients for clinical trials through advertisements.

Meanwhile, patients often must search through pages of technical descriptions on websites such as ClinicalTrials.gov to find clinical trials and medical research in which they can participate.

In addition, drugmakers increasingly are developing medications targeted at very specific patient groups, making it even more difficult to find trial participants.

About Reg4All

The new registry -- which builds on Genetic Alliance's existing disease registry and biobank -- will store patients' data stripped of identifying information.

Private Access -- a company that develops platforms for sharing health data -- is partnering with Genetic Alliance to control a "privacy layer" that has the key to identifying registry participants.

Patients using the database will be able to decide how their data are shared with researchers and track who uses their data for what purposes.

When a patient joins the registry and inputs their information, the registry's online software will recommend studies for which the patient qualifies.

The registry also will advance Genetic Alliance's work on building registries and biobanks of patient DNA and other samples for studies on the causes of diseases.


Donna Cryer -- president of the American Liver Foundation -- said, "I've never seen anything that created such a solution from the patient's perspective."

Krishanu Saha -- a stem cell engineer at the University of Wisconsin-Madison -- said, "Exploring the notion of privacy as not the same for everyone is an interesting concept." He added that he believes more patients will be interested in clinical research if they are able to control how their data are used (Humphries, MIT Technology Review, 3/14).

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