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英国儿科监测单位——一种调查儿童罕见疾病的开创性方法。1995年6月研讨会报告。

The British Paediatric Surveillance Unit--a pioneering method for investigating the less common disorders of childhood. Report of a seminar held in June 1995.

作者信息

Hall S M, Nicoll A

机构信息

Department of Paediatrics, Children's Hospital, Sheffield, London, UK.

出版信息

Child Care Health Dev. 1998 Mar;24(2):129-43. doi: 10.1046/j.1365-2214.1998.00052.x.

Abstract

The British Paediatric Surveillance Unit (BPSU) of the Royal College of Paediatrics and Child Health is an 'active' case reporting scheme set up in 1986 to facilitate the investigation of uncommon childhood conditions of public health and clinical importance in the UK and Ireland. Its methodology involves the monthly mailing of a card containing a menu of up to 12 reportable conditions to all clinically active paediatricians in the British Isles. Respondents either indicate any cases seen in the past month or make a nil return. The BPSU forwards details of respondents reporting cases to the investigators, who when obtain information from the clinician. The menu changes from time to time and studies undergo a rigorous selection process. In 1995, the BPSU held an international seminar to review lessons learned during its first decade which would improve and develop surveillance of paediatric disorders. Over the 9 years to mid-1995 a total of 34 studies took place (25 completed, nine still in progress) with a high respondent response rate (e.g. 90% in 1994). Underascertainment had been addressed by seeking, in parallel, other sources of cases, e.g. death registrations, laboratory reports, other relevant clinical specialists, and by use of capture-recapture techniques. Other specialties and countries have since followed the BPSU example providing opportunity for multispeciality and international studies. The latter were valuable, but required careful planning to standardize case definitions and laboratory techniques, otherwise geographical differences in the incidence of study disorders were difficult to interpret. The BPSU has facilitated studies which increased knowledge about a range of disorders and informed national policy decisions. It also increased diagnostic awareness and showed itself able to respond to public health emergencies. Its emulation in further countries will have similar benefits.

摘要

英国皇家儿科学会和儿童健康学会的英国儿科监测单位(BPSU)是一个于1986年设立的“主动”病例报告计划,旨在促进对英国和爱尔兰具有公共卫生和临床重要性的罕见儿童疾病的调查。其方法包括每月向英伦诸岛所有临床活跃的儿科医生邮寄一张卡片,卡片上列出多达12种可报告疾病的清单。受访者要么指明过去一个月内见到的任何病例,要么回复无病例。BPSU将报告病例的受访者的详细信息转发给调查人员,调查人员随后从临床医生那里获取信息。清单会不时更改,研究要经过严格的筛选过程。1995年,BPSU举办了一次国际研讨会,以回顾其头十年吸取的经验教训,这些经验教训将改进和发展对儿科疾病的监测。到1995年年中为止的9年里,共进行了34项研究(25项已完成,9项仍在进行中),受访者的回复率很高(例如1994年为90%)。通过同时寻找其他病例来源,如死亡登记、实验室报告、其他相关临床专家,并使用捕获再捕获技术,解决了漏报问题。此后其他专业领域和国家效仿了BPSU的做法,为多专业和国际研究提供了机会。后者很有价值,但需要仔细规划以标准化病例定义和实验室技术;否则,研究疾病发病率的地理差异很难解释。BPSU推动了一些研究,这些研究增加了对一系列疾病的了解,并为国家政策决策提供了依据。它还提高了诊断意识,并表明自己能够应对突发公共卫生事件。在更多国家效仿它将带来类似的益处。

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