Patient Led Research Paving the Way For Early Diagnosis of Autoimmune Arthritis Diseases

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A new patient-centered research study led by the International Foundation for Autoimmune Arthritis aims to develop a new standard in early detection and diagnosis of Autoimmune Arthritis diseases. As a result of this study, patients may experience less permanent, irreversible damage that leads to disability and lower chances for remission.

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Most patients who experience a delay in diagnosis will also experience permanent, irreversible damage and disability. No more.

The International Foundation for Autoimmune Arthritis (IFAA) is launching a patient-centered research study to develop and maintain a new equation for change in rheumatology: Early Detection + Early Referrals + Early Diagnosis + Early Treatment = Better Chance to Combat Unnecessary, Irreversible Damage and Elevate the Chances for Remission in Autoimmune Arthritis. The organization, consisting of patients who are current or former business executives and educators, will take the lead in what is believed to be a groundbreaking study for the rheumatology community. It will launch to the public live during World Autoimmune Arthritis Day 2014, May 20th.

The Early Symptoms of Autoimmune Arthritis Study will address improper identification of early symptoms of Autoimmune Arthritis diseases that may correlate with a delay in detection, referrals, and diagnosis. Primary Autoimmune Arthritis is an umbrella term which includes the following disorders: Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Systemic Lupus Erythematosus, Sjögren’s Syndrome, and Adult Onset Still’s Disease, all which are included in this study. IFAA has identified that current published symptoms of these primary Autoimmune Arthritis diseases, which are used for detection, referral, and diagnosis, are inconsistent and fail to include some of the most common early symptoms identified in patient self-reports of their individual early disease experience. In partnership with IFAA, the following Nonprofit Expert Organizations also are participating by reviewing the materials and offering disease-specific expertise: Spondylitis Association of America, Lupus UK, Sjögren’s Syndrome Foundation, and the International Still’s Disease Foundation.

“Most patients who experience a delay in diagnosis will also experience permanent, irreversible damage and disability. No more,” explains Project Manager, Rheumatoid Arthritis patient, and CEO of the International Foundation for Autoimmune Arthritis. “IFAA and our team of nonprofit experts are determined to jumpstart a plan to implement a better early detection, referral, and diagnosis model so patients no longer must endure unnecessary disability.”

The aim of this study is to develop a comprehensive and consistent Early Symptom Patient Model (ESPM) for the above mentioned Autoimmune Arthritis diseases and for the group as a whole, by cross-referencing existing symptom publications and detection/diagnostic criteria with the empirical research obtained from the Early Symptoms of Autoimmune Arthritis: Patient-Centered Research Study. In addition to these core objectives, a secondary focus will be to evaluate the pervasiveness of “Undifferentiated Connective Tissue Disease/Spondyloarthropathy” diagnoses in patients which later progress to a confirmed diagnosis of Autoimmune Arthritis.

IFAA believes the results of this study will not only help to better chances for remission, but practitioners too can benefit if they have a more complete detection model to first recognize Autoimmune Arthritis diseases.

IFAA is launching this study to the public live during World Autoimmune Arthritis Day, a 47 hour online, computer-generated virtual convention where patients can interact in real time with other patients, nonprofits, advocates, doctors, and researchers from over a dozen countries. Westrich will be hosting a live chat at the Early Symptoms Study Exhibitor Booth at 6:30pm/ET USA on May 20th, 2014, where the project will be launched and patients will be invited to take part in the research project. To attend this presentation, register for World Autoimmune Arthritis Day’s online event at their website Pre-registration is $5 USD, $7 after the event begins.

IFAA would like to extend a special thank you to the Janssen Pharmaceutical Companies and their nonprofit partners for helping to make this study possible.

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