News AARDA Launches Registry to Help Link MS Patients, Researchers AARDA Launches Registry to Help Link MS Patients, Researchers by Patricia Silva, PhD | February 16, 2017 Share this article: Share article via email Copy article link The world’s first registry for patients with multiple sclerosis (MS)Ā and other autoimmune diseases (ADs) has gone online, to honorĀ 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),Ā which isĀ 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 AARDAās 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 canĀ contact AARDA or the originating NCAPG group, whichĀ 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. āWith this ābig dataā project, AARDAās hope is to drive much-needed clinical research into the numerous and wide-ranging ADs,”Ā Virginia T. Ladd, AARDAās founder and executive director, said in a press release.Ā “This research ultimately will help improve time to diagnosis of these diseases, as well as advance knowledge into causes, treatments and perhaps cures.ā 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. āBy 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 ā not just one or two,ā Ladd added. Print This Page About the Author Patricia Silva, PhD PatrĆcia holds a PhD in medical microbiology and infectious diseases from the Leiden University Medical Center, Netherlands, and completed a postdoctoral research fellowship at the Instituto de Medicina Molecular, Lisbon, Portugal. Her work in academia was mainly focused on molecular biology and the genetic traits of infectious agents such as viruses and parasites. PatrĆcia earned several travel awards to present her work at international scientific meetings. She is a published author of several peer-reviewed science articles. Tags autoimmune diseases, clinical trials
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