Registry Empowers Patients to Participate in Clinical Research, Advanced Medical Knowledge About Autoimmunity
Newswise — DETROIT, February 7, 2017 – Ushering in March as National Autoimmune Disease Awareness Month, the American Autoimmune Related Diseases Association, Inc. (AARDA) today unveiled the Autoimmune Research Network, known as ARNet, the world’s first fully-functioning patient registry for individuals diagnosed with one or more of the 100-plus known autoimmune diseases (ADs).
The result of two years of beta-testing by AARDA, ARNet facilitates research into autoimmunity and autoimmune diseases by creating one comprehensive, central database of anonymous patient information. Such information includes diagnosed diseases and other demographics that investigators around the world can use to enlist patients in clinical research studies. In addition, ARNet will help researchers answer epidemiological questions, identify trends, and track the number of patients with certain ADs and their experience obtaining a correct diagnosis.
Managed by Global Vision Technologies, a pioneering firm specializing in custom-tailored, HIPAA compliant patient registries, the ARNet database currently contains information for nearly 10,000 patients and continues to grow.
“With this ‘big data’ project, AARDA’s hope is to drive much-needed clinical research into the numerous and wide-ranging ADs, including the rheumatic, neurologic, dermatologic, endocrine and so on. This research ultimately will help improve time to diagnosis of these diseases, as well as advance knowledge into causes, treatments and perhaps cures,” said Virginia T. Ladd, Founder and Executive Director, AARDA.
Despite the fact that ADs affect more Americans (more than 50 million) than do cancer (approximately 15 million) and heart disease (approximately 28 million), federal research for autoimmune diseases is significantly underfunded. According to the National Institutes of Health, in 2016 federal research funding for ADs was $821 million compared to $5.4 billion for cancer and $1.7 billion for heart disease.
Working in collaboration with National Coalition of Autoimmune Patient Groups (NCAPG) member organizations and other interested parties, AARDA is encouraging AD patients to sign on to the registry, get involved and be part of the solution as researchers, both academic and commercial across the globe work to understand the puzzle that is 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.
Currently, participating NCAPG organizations include Relapsing Polychondritis Awareness and Support Foundation, the National Adrenal Diseases Foundation, Conquer Myasthenia Gravis and AARDA.
“As a member of the ARNet Steering Committee, the Relapsing Polychondritis Awareness and Support Foundation is pleased to be involved in the development of ARNet, 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,” said Tom Christie, CEO, Relapsing Polychondritis Awareness and Support Foundation.
How it Works for Patients -- Confidentially
Patients who have been diagnosed with one or more autoimmune disease can register online at AARDA’s website (www.aarda.org) or the websites of participating NCAPG groups.
The information is anonymous and made available to researchers interested in looking at the “bigger autoimmune picture.” The database allows them to do queries on multiple data sources at once. When investigators identify an individual appropriate for a clinical trial, they contact AARDA or the originating NCAPG group who in turn contacts the patient (who up until this point has remained anonymous). Once the patient agrees, AARDA or the NCAPG group issues an invitation to the patient regarding his/her potential participation in the study, eventually connecting him/her with the researcher.
About Global Vision Technologies
Global Vision Technologies (GVT) is a technology consulting and software development firm that specializes in delivering custom-tailored, HIPAA compliant patient registry solutions for organizations who are looking for a specific application to solve their patient data collection, compliance and reporting/analysis needs. GVT’s solution – ClinicalPURSUIT, is a web-based application that allows data entry to be collected securely over the web making the data immediately “actionable” and ready for analysis. For more information, visit www.globalvisiontech.com and www.patientregistrysoftware.com
About Autoimmune Diseases
There are more than 100 known autoimmune diseases, including psoriasis, Addison’s disease, Graves’ disease, Sjogren’s syndrome, Type 1 diabetes, relapsing polychondritis, myasthenia gravis, multiple sclerosis, rheumatoid arthritis, Crohn’s disease and lupus. The underlying cause of all of these diseases is autoimmunity which disproportionately affects women. Of the 50 million Americans living and coping with ADs, more than 75 percent are women. Given the genetic component, autoimmune diseases can run in families. AD is one of the top 10 leading causes of death of women under the age of 65 and is responsible for more than $100 billion in direct health care costs annually.
About American Autoimmune Related Diseases Association
Celebrating its 25th anniversary, American Autoimmune Related Diseases Association (AARDA) is the nation's only non-profit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases. For more information, please visit www.aarda.org .
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