Showing posts with label Spondylitis Assoc. of America. Show all posts
Showing posts with label Spondylitis Assoc. of America. Show all posts
Wednesday, March 19, 2014
World Autoimmune Arthritis Day!!!
Wednesday, January 8, 2014
Another Huge JUMP ahead for IFAA thanks to Janssen Global!
And we're off!
The International Foundation for Autoimmune Arthritis received a large grant from Janssen Global, Inc. to begin a study that, when finished, will combat the delay in diagnosis that is often associated with these diseases. Current AVERAGE time for diagnosis is 1-3 PLUS years, but the "plus years" is often 5, 7, even 10 or more. Given 50% of all patients can experience complete disability 10 years after ONSET if not treated properly, this means if a delay in diagnosis is 3 years the patient is almost 1/3 of the way to disability before ever starting treatment...and any damage accrued in that time is PERMANENT and IRREVERSIBLE, regardless if clinical remission can be achieved.
We will begin developing a survey that will analyze the early symptoms- as recorded by patients- then take the findings and cross-reference what is currently used as a model for detection, referral, and diagnosis. With these results we will then be able develop wellness education for primary care physicians and other "first responders", as well as rheumatologists, that can broaden the understanding of early symptoms, thus promoting an accelerated process towards diagnosis. In addition, we will be able to review the crossover in symptoms that occur in all Autoimmune Arthritis diseases, regardless of the outcome of final diagnosis, which should narrow the mystery of what it could be and push towards more firm treatment plans associated with the 'undifferentiated' genre.
We'll be coming for YOU to participate in this two part study, first analyzing patients in the US and the second phase will expand to a global level. YOU can be part of the change, matter-in-fact, we insist...because we are all about making the patient first in research!
Survey will be ready for distribution in March 2013. Results will be revealed LIVE during World Autoimmune Arthritis Day in May.
Thank you also to the Spondylitis Association of America & the @International Stills Disease Foundation for already signing on to help us recruit patients and distribute the survey. "Together we will move mountains, bulldozers are so overrated." -Tiffany Westrich, CEO of IFAA
The International Foundation for Autoimmune Arthritis received a large grant from Janssen Global, Inc. to begin a study that, when finished, will combat the delay in diagnosis that is often associated with these diseases. Current AVERAGE time for diagnosis is 1-3 PLUS years, but the "plus years" is often 5, 7, even 10 or more. Given 50% of all patients can experience complete disability 10 years after ONSET if not treated properly, this means if a delay in diagnosis is 3 years the patient is almost 1/3 of the way to disability before ever starting treatment...and any damage accrued in that time is PERMANENT and IRREVERSIBLE, regardless if clinical remission can be achieved.
We will begin developing a survey that will analyze the early symptoms- as recorded by patients- then take the findings and cross-reference what is currently used as a model for detection, referral, and diagnosis. With these results we will then be able develop wellness education for primary care physicians and other "first responders", as well as rheumatologists, that can broaden the understanding of early symptoms, thus promoting an accelerated process towards diagnosis. In addition, we will be able to review the crossover in symptoms that occur in all Autoimmune Arthritis diseases, regardless of the outcome of final diagnosis, which should narrow the mystery of what it could be and push towards more firm treatment plans associated with the 'undifferentiated' genre.
We'll be coming for YOU to participate in this two part study, first analyzing patients in the US and the second phase will expand to a global level. YOU can be part of the change, matter-in-fact, we insist...because we are all about making the patient first in research!
Survey will be ready for distribution in March 2013. Results will be revealed LIVE during World Autoimmune Arthritis Day in May.
Thank you also to the Spondylitis Association of America & the @International Stills Disease Foundation for already signing on to help us recruit patients and distribute the survey. "Together we will move mountains, bulldozers are so overrated." -Tiffany Westrich, CEO of IFAA
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