中华实用儿科临床杂志
中華實用兒科臨床雜誌
중화실용인과림상잡지
Journal of Applied Clinical Pediatrics
2015年
9期
641-643
,共3页
原发性免疫缺陷病%利益相关者%静脉注射免疫球蛋白%新生儿筛查%造血干细胞移植
原髮性免疫缺陷病%利益相關者%靜脈註射免疫毬蛋白%新生兒篩查%造血榦細胞移植
원발성면역결함병%이익상관자%정맥주사면역구단백%신생인사사%조혈간세포이식
Primary immunodeficiency diseases%Stakeholder%Intravenous immunoglobulin%Newborn screening%Hematopoitic stem cell transplantation
原发性免疫缺陷病(PID)属儿童免疫系统罕见病,虽然发病率低,但致死致残率极高.挽救PID患儿生命和提高其生存质量需要全社会,包括全部利益相关者(stakeholder)的共同努力.尤其是在静脉注射免疫球蛋白替代治疗、新生儿筛查和造血干细胞移植治疗等干预手段的合理使用方面,作为PID利益相关者的核心方,儿童免疫专科医师应着力产出关键数据,为政府决策、社会资源分配提供依据.
原髮性免疫缺陷病(PID)屬兒童免疫繫統罕見病,雖然髮病率低,但緻死緻殘率極高.輓救PID患兒生命和提高其生存質量需要全社會,包括全部利益相關者(stakeholder)的共同努力.尤其是在靜脈註射免疫毬蛋白替代治療、新生兒篩查和造血榦細胞移植治療等榦預手段的閤理使用方麵,作為PID利益相關者的覈心方,兒童免疫專科醫師應著力產齣關鍵數據,為政府決策、社會資源分配提供依據.
원발성면역결함병(PID)속인동면역계통한견병,수연발병솔저,단치사치잔솔겁고.만구PID환인생명화제고기생존질량수요전사회,포괄전부이익상관자(stakeholder)적공동노력.우기시재정맥주사면역구단백체대치료、신생인사사화조혈간세포이식치료등간예수단적합리사용방면,작위PID이익상관자적핵심방,인동면역전과의사응착력산출관건수거,위정부결책、사회자원분배제공의거.
Primary immunodeficiency diseases (PIDs) represent a typical group of rare diseases with high mortality and disability with regard to long-term outcome.Saving life and improving quality of life of the patients with PID remain to be the responsibility of the stakeholders from all aspects of the society.As the central player in the long run of PID campaign,pediatric immunologists should play a critical role in providing key epidemiological data in favor of political decision-making and social resource distribution.
