AARDA Launches Registry to Help Link MS Patients, Researchers

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by Patricia Silva, PhD |

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AARDA registry

The world’s first registry for patients with multiple sclerosis (MS) and other autoimmune diseases (ADs) has gone online, to honor National Autoimmune Disease Awareness Month in March.

The Autoimmune Research Network (ARNet) is a creation of the Michigan-based American Autoimmune Related Diseases Association (AARDA), which is collaborating with the National Coalition of Autoimmune Patient Groups (NCAPG) and other organizations to promote the new platform.

ARNet is the result of two years of testing, and aims to boost research by creating a comprehensive, central database of anonymous patient information that scientists can use to enlist patients in clinical studies.

The platform works by allowing patients who have been diagnosed with one or more autoimmune diseases to register online at AARDA’s website, or at websites of participating NCAPG groups.

All information shared is anonymous, and the database allows researchers to do queries on several data sources at once without patients being identified. However, when investigators find individuals who might qualify for a clinical trial based on their profiles, they can contact AARDA or the originating NCAPG group, which in turn will contact the patient.

ARNet’s goal is to help researchers answer epidemiological questions, identify trends and track how patients with autoimmune diseases are experiencing the path to a correct diagnosis. Currently, the growing platform contains information on about 10,000 patients.

“With this ‘big data’ project, AARDA’s hope is to drive much-needed clinical research into the numerous and wide-ranging ADs,” Virginia T. Ladd, AARDA’s founder and executive director, said in a press release. “This research ultimately will help improve time to diagnosis of these diseases, as well as advance knowledge into causes, treatments and perhaps cures.”

AARDA encourages patients with autoimmune diseases to sign on to the registry, get involved and be part of the solution by helping researchers understand autoimmunity better.

“By opening ARNet to researchers and patients, we seek to fill in some of those research gaps and foster projects that uncover knowledge that will benefit all autoimmune diseases – not just one or two,” Ladd added.

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