Huemer C, Huemer M, Dorner T, Falger J, Schacherl H, Bernecker M, Artacker G, Pilz I
Department of Pediatrics, University of Vienna, Gottfried von Preyersches Kinderspital, Austria.
J Rheumatol. 2001 Sep;28(9):2116-9.
To establish a population based disease registry for pediatric rheumatology in a defined population of Austria; to describe the demographic and diagnostic classification of children referred to pediatric rheumatology clinics; and to estimate the incidence of pediatric rheumatic diseases in Eastern Austria.
For 2 years (1997-98) all pediatric rheumatology centers in the area contributed data on all new cases to a prospective multicenter patient registry. Diagnostic criteria defined the rheumatic disease cases, determined by a pediatric rheumatologist, and record linkage was carried out to avoid duplication of subjects.
Rheumatic conditions were diagnosed in 107 subjects. Juvenile rheumatoid arthritis (JRA) was the most frequently encountered rheumatic condition (49.5%), followed by spondyloarthropathy (SpA, 33.6%) and systemic lupus erythematosus (SLE, 5.6%). The mean annual incidence of JRA, SpA, and SLE among children referred to pediatric rheumatology centers was 4.28, 2.9, and 0.48 per 100,000 children at risk, respectively.
Establishment of a population based disease registry led to collection of descriptive epidemiologic data on a defined regional cohort of children with rare disorders. Our registry will provide data on pediatric rheumatic diseases in a European population and will allow more accurate comparisons between populations for future research. Our data also indicate that more resources should be designated for the care of pediatric rheumatic diseases in view of the relatively high incidences of these diseases.
在奥地利特定人群中建立基于人群的儿科风湿病疾病登记系统;描述转诊至儿科风湿病诊所儿童的人口统计学特征和诊断分类;并估计奥地利东部儿科风湿性疾病的发病率。
在两年时间(1997 - 1998年)里,该地区所有儿科风湿病中心将所有新病例的数据纳入一个前瞻性多中心患者登记系统。诊断标准由儿科风湿病专家确定风湿性疾病病例,并进行记录链接以避免受试者重复。
107名受试者被诊断患有风湿性疾病。幼年特发性关节炎(JRA)是最常遇到的风湿性疾病(49.5%),其次是脊柱关节炎(SpA,33.6%)和系统性红斑狼疮(SLE,5.6%)。转诊至儿科风湿病中心的儿童中,JRA、SpA和SLE的年平均发病率分别为每10万名有风险儿童4.28例、2.9例和0.48例。
建立基于人群的疾病登记系统导致收集了关于特定区域罕见疾病儿童队列的描述性流行病学数据。我们的登记系统将提供欧洲人群中儿科风湿性疾病的数据,并将使未来研究在不同人群之间进行更准确的比较。我们的数据还表明,鉴于这些疾病相对较高的发病率,应指定更多资源用于儿科风湿性疾病的护理。