SCPE的工作、标准化和定义—SCPE活动概貌:欧洲脑瘫登记协作网(英文)

SCPE work, standardization and definition — An overview of the activities of SCPE: a collaboration of European CP Registers

摘要:

欧洲脑瘫监测组织(SurveillanceofCerebralPalsyinEurope,SCPE)协作网络的主要目的是建立欧洲脑瘫病例的中央数据库。对脑瘫患病率变化趋势的监控有利于对脑瘫危险因素的研究以及提高脑瘫患儿的生活质量。在脑瘫多中心协作登记工作中,为了准确一致地鉴定脑瘫病例,研究人员采用明确、统一的脑瘫定义。SCPE协作组发现每1000个存活儿中脑瘫的患病例为1.5～3例。在1980至1996年间的出生组群中(n=9128),53.9%的脑瘫患儿为双侧痉挛性脑瘫,31.0%的为单侧痉挛性脑瘫,6.6%为运动障碍,4.1%为共济失调。在脑瘫患儿中,20.4%患儿出生体重不足1500g,而25.5%的孕龄不足32周。29.5%的脑瘫患儿出现了智力障碍(IQ<50)。不能步行(甚至在协助下)的脑瘫患儿比例为30.3%。12.5%的脑瘫患儿出现了严重的视力缺损。做好登记工作有助于了解脑瘫流行病学的特征,是进行脑瘫流行病学研究的一种最佳方式。

Abstract:

The main aim of the Surveillance of Cerebral Palsy in Europe (SCPE) network was to develop a central database of cerebral palsy (CP) cases across Europe. Monitoring trends in prevalence rates of CP should contribute to collaborative studies on risk factors or quality of life for children living with CP. A multi-centre collaboration of CP registries used a clear definition of CP to accurately and consistently identify cases of CP. The rate of CP within the collaboration varied from 1.5 to 3 per 1 000 live births. For the birth cohort 1980 to 1996 (n=9 128), 53.9% of the CP children had a bilateral spastic cerebral palsy, 31.0% had unilateral spastic CP, 6.6% were dyskinetic and 4.1% ataxic. Among CP children, 20.4% had a birth weight less than 1 500g and 25.5% were born before 32 weeks gestational age. Intellectual impairment corresponding to an IQ<50 was found in 29.5% of CP children. The proportion of CP children unable to walk, even with aids, was 30.3%. Twelve and a half percent of CP children were known to have a severe visual impairment. It was concluded that registers are the best means to implement epidemiological research into CP.