Scientific contributions of ankylosing spondylitis patient advocacy groups

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Abstract
The Spondylitis Association of America has been the driving force behind a major research initiative in the US, having leveraged a substantial amount of money into a $4.5 million grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The grant last year established the North American Spondylitis Consortium to expedite the search for genes that determine susceptibility to ankylosing spondylitis. The German Ankylosing Spondylitis Society, which has more than 14,000 patient members, initiated in 1996 a professional survey of ankylosing spondylitis patients, with financial support from the German Federal Health Ministry. The results of this survey have recently been published, but only in the German language; a part of it is summarized here in English. Following are some of the important findings. The average age at disease onset does not differ significantly between men and women, but there is a significantly longer delay in disease diagnosis among female patients. The average delay in disease diagnosis is getting shorter; there was an average delay of 15 years for patients with disease onset in the 1950s, and it decreased to 7.5 years for patients with disease onset between 1975 and 1979. There was a relatively greater degree of underdiagnosis of the disease among female than male patients in the past; whereas only 10% of the patients in whom the disease was diagnosed in about 1960 were women, this percentage has progressively increased in the subsequent decades to reach 46% among those in whom the disease was diagnosed since 1990. The speed at which spinal ankylosis progresses is slower in female patients, but women are in a significantly worse situation than men in terms of pain and the need for drug therapy, even though the women in the German Ankylosing Spondylitis Society sample are, on average, younger than the men and have a shorter average disease duration. It is possible that the slower and relatively incomplete progression to spinal ankylosis in female patients impedes the occurrence of a decrease in pain with time, compared with that observed in male patients.