The world’s first registry for patients with lupus and other autoimmune diseases has gone online, just in time for National Autoimmune Disease Awareness Month in March.
The Autoimmune Research Network (ARNet), launched by the Michigan-based American Autoimmune Related Diseases Association (AARDA), is a research network that lets scientists obtain data on patients who qualify for their research, then recruit them through the help of patient advocacy groups.
Those advocacy groups collect relevant demographic and other information and contact autoimmune disease (AD) patients eligible for research. ARNet will also help researchers identify trends, answer epidemiological questions and track the number of patients with certain ADs and their experience in getting a correct diagnosis.
ARNet uses a query tool based on i2b2 — an open-sourced software program from the National Institutes of Health (NIH) that is easy for researchers to use. Managed by Global Vision Technologies, the ARNet database contains data 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 news 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 ADs to join the registry and help scientists worldwide in their efforts to better understand autoimmunity.
“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,” said Ladd.
AARDA works with the National Coalition of Autoimmune Patient Groups (NCAPG), which includes 40 organizations including the National Adrenal Diseases Foundation, Conquer Myasthenia Gravis and the Relapsing Polychondritis Awareness and Support Foundation (RPASF).
Patients with ADs can register on ARNet either through AARDA’s website or those of participating groups.
Patient information in the database is kept anonymous but is made available to researchers working on ADs, letting them do queries on multiple data sources at once. When researchers identify a patient who might be eligible for a clinical study, they contact AARDA or NCAPG, which then contacts the patient. Once he or she agrees to join the study, either AARDA or NCAPG sends that patient an invitation to get in touch with the investigator.
Tom Christie, RPASF’s chief executive, said his foundation is pleased to be involved in ARNet, which he called “a tool that both researchers and members can use to leverage the power of patient data while at the same time giving the patients a degree of control over their disease that very often leaves the people involved in their care and the patient themselves feeling out of control.”