유럽 ․ 호주 ․ 미국의 뇌성마비인 등록 시스템 사례 연구
A Case Study of Cerebral Palsy Registries in Europe, Australia, and USA
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연구목적: 이 연구는 유럽, 호주, 미국의 뇌성마비인 등록 시스템 구축 사례를 살펴보고 향후 우리나라에서 뇌성마비 등록 시스템을 구축하기 위한 방향을 탐색하는 데 목적이 있다. 연구방법: 문헌연구를 중심으로 하였으며, Google을 기반으로 한 뇌성마비등록(cerebral palsy register) 관련 웹사이트 검색, RISS를 기반으로 뇌성마비, 뇌병변장애, cerebral palsy, register, registry, surveillance 등을 키워드로 한 관련 국내외 학술 논문과 전문기관 연구보고서 등을 고찰하였다. 연구결과: 뇌성마비인 등록 시스템 사례로 유럽의 SCPE, 호주의 ACPR, 미국의 ADDM 및 CPRR의 운영 방법과 수집 자료를 제시하였다. 운영 방법으로는 목적, 뇌성마비 정의, 적격성, 재원, 모집단, 자료 수집 및 확정 연령, 자료 수집 동의 방식, 검사도구의 8가지를 살펴보았다. 또한 수집 내용으로는 World CP Congress에서 제시한 10가지를 고찰하였다. 결론: 유럽, 호주, 미국의 뇌성마비인 등록 시스템 사례를 참조하여 우리나라에서도 국가 차원에서 뇌성마비인 등록 시스템을 운영하여야 하며, 학계와 전문가들은 뇌성마비인 등록 시스템 운영을 위한 방법과 자료 수집 내용에 관한 연구 개발을 지속하여야 한다.
Abstract
Purpose: This study investigated cerebral palsy registries in Europe, Australia, and USA and suggested directions to establish a cerebral palsy register system in Korea. Method: The method of this study was reviewing literature including journal articles, research reports, and web-site information based on Google search and RISS research database using key words such as cerebral palsy, register, registry, surveillance, and brain lesion. Results: The management methods and data collection items were investigated in SCPE in Europe, ACPR in Australia, ADDM and CPRR in USA, respectively. As management methods, aims of surveillance programs, definition of cerebral palsy, denominator, funding, eligibility, data collection and ascertainment, consent requirements, and assessment tools were reviewed. Ten data collection items which all cerebral palsy registries surveyed in World CP Congress in 2014 were presented. Conclusion: Cerebral palsy register system should be established by the government in Korea and management methods and data collection items should be studied further by the professionals in the field.
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