From Chris Miller, Director of Programs at the Spondylitis Association of America (SAA). Originally printed in the Summer 2013 issue of SAA's news magazine,
Spondylitis Plus ---
The Spondylitis Association of America (SAA) turns 30 years young this summer (2013), and I am proud to have been with SAA for nearly a third of its existence. This past decade has been a whirlwind of progress as we have continued to lead the charge in spondyloarthritis research. During this year alone, we have driven a number of exciting, essential research initiatives:
Spondyloarthritis Treatment Guidelines] - After helping fund the project, SAA is collaborating with the American College of Rheumatology (ACR) in developing a much needed set of standardized treatment guidelines for spondyloarthritis. These guidelines will address the most commonly encountered clinical situations when treating ankylosing spondylitis and axial spondyloarthritis patients. Additionally, the new guidelines will address preventive care, disease activity monitoring, pharmacological treatment and special patient populations including children with juvenile-onset spondyloarthritis.
This is the first time in history that ACR has collaborated with another organization in developing such guidelines.
Spondylitis Patient Registry - Funded initially by SAA, the patient registry is a database - a compilation of data on people with ankylosing spondylitis. In this case, the registry is a combination of three current patient databases that have been used in ankylosing spondylitis research. Thus, we are currently building a new database that can look at thousands and potentially tens of thousands of patients with AS and see health trends, disease severity over time, age, medication effectiveness, complications and more.
The Triple-A (Australo-Anglo-American) Spondyloarthritis Consortium, or TASC, has identified 20-plus genes linked to ankylosing spondylitis since 2007. In the future, these genes can lead to new treatments and possibly earlier diagnosis.
SAA originally ignited spondylitis genetic research in the US and continues to participate in the ongoing
TASC study by encouraging enrollment.For 30 years, we have been a primary launch point for spondyloarthritis research in the US. Together with our supporters we will continue to do everything in our power in the quest for the cure.
Sincerely,
Chris Miller
Editor-in-Chief, Spondylitis Plus
Director of Programs, SAA
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