Hello Autoimmune Arthritis Supporter,
The International Foundation for Autoimmune Arthritis has teamed up with the Sjögren’s Syndrome Foundation, Spondylitis Association of America, Lupus UK, and the International Still’s Disease Foundation to lead a patient-centered research study that will analyze early symptoms, as reported by the patient, for the following six core Autoimmune Arthritis diseases: Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren’s Syndrome (SS), Adult Onset Still’s Disease (AOSD), and Systemic Lupus Erythematosus (SLE). If you are a patient diagnosed with one (or more) of these diseases, you can help to combat delay in diagnosis.
About the Study
This study will investigate current improper identification of early symptoms that may correlate with a delay in diagnosis. With a vast majority of patients affected, early symptoms that accompany a primary Autoimmune Arthritis disease are often comprised of extensive joint involvement, systemic features and other complications. This nonprofit team has identified that current published symptoms of the 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.
Using results from the patient-reported early symptoms collected in this study, we will develop a comprehensive and consistent Early Symptom Patient Model (ESPM) for both the above mentioned individual Autoimmune Arthritis diseases and for the group as a whole. In addition to these core objectives, a secondary focus will be to evaluate the pervasiveness of “Undifferentiated Autoimmune Disease” in patients which later progress to a confirmed diagnosis of Autoimmune Arthritis.
Our team believes the current referral criteria and recommendation to delay treatment for undifferentiated autoimmune diseases is dangerous. Delays in treatment can result in permanent and irreversible damage which normally occurs in the early course of Autoimmune Diseases. No more unnecessary delays, no more unnecessary disability. No more.
30 minutes of your time can change millions of lives. You may qualify if:
• A patient who was diagnosed with one or more of the following diseases: Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren’s Syndrome (SS), Adult Onset Still’s Disease (AOSD), or Systemic Lupus Erythematosus (SLE)
• Onset age 18 years or after (adult onset)
• Diagnosed after 1995
If you qualify to participate, please use this link:
If you are not a patient and know someone who you feel would be interested in this study, don’t hesitate to ask them to participate, and send them the link.
Survey takes approximately 30-40 minutes to complete and can be saved and revisited to complete. All responses due by June 30th, 2014.