It
took 18 months and over 3500 hours. It required online educational
courses in research methods and data analysis in addition to private
mentoring from a lead research consultant. It needed cooperation from
our friends at the Spondylitis Association of America, Lupus UK, Sjögren's Syndrome Foundation,
and International Still's Disease Foundation to serve as Nonprofit
Organizational Experts on symptom reporting. It required patients with
RA, PsA, SLE, Sjogren's, Ankylosing Spondylitis, and Adult Onset Still's
Disease to see if they qualified to participate and, if so, donate 60
minutes of their time to report their disease progression from onset
through 24 months.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.
The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.
A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.
The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.
A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.
