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Public Health and Rare Diseases: Oxymoron No More.

作者信息

Valdez Rodolfo, Ouyang Lijing, Bolen Julie

机构信息

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Rd NE, Mailstop E-88, Atlanta, GA 30333. Email:

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.

出版信息

Prev Chronic Dis. 2016 Jan 14;13:E05. doi: 10.5888/pcd13.150491.

DOI:10.5888/pcd13.150491
PMID:26766846
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4714940/
Abstract
摘要

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本文引用的文献

1
A review of the social, psychological, and economic burdens experienced by people with spina bifida and their caregivers.对脊髓裂患者及其照顾者所经历的社会、心理和经济负担的回顾。
Neurol Ther. 2013 Mar 22;2(1-2):1-12. doi: 10.1007/s40120-013-0007-0. eCollection 2013 Dec.
2
Updated estimates of neural tube defects prevented by mandatory folic Acid fortification - United States, 1995-2011.美国 1995-2011 年因强制叶酸强化而预防神经管缺陷的最新估计。
MMWR Morb Mortal Wkly Rep. 2015 Jan 16;64(1):1-5.
3
Avoiding 40% of the premature deaths in each country, 2010-30: review of national mortality trends to help quantify the UN sustainable development goal for health.避免每个国家 40%的过早死亡：审查各国死亡率趋势以帮助量化联合国卫生可持续发展目标。
Lancet. 2015 Jan 17;385(9964):239-52. doi: 10.1016/S0140-6736(14)61591-9. Epub 2014 Sep 18.
4
Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry.2000年至2010年及以后囊性纤维化患者的寿命：囊性纤维化基金会患者登记处的生存分析
Ann Intern Med. 2014 Aug 19;161(4):233-41. doi: 10.7326/M13-0636.
5
Ashkenazi Jewish population screening for Tay-Sachs disease: the international and Australian experience.对阿什肯纳兹犹太人群进行泰-萨克斯病筛查：国际及澳大利亚的经验。
J Paediatr Child Health. 2015 Mar;51(3):271-9. doi: 10.1111/jpc.12632. Epub 2014 Jun 13.
6
A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability.脆性X综合征、自闭症谱系障碍和智力残疾对家庭财务及就业影响的比较。
Res Dev Disabil. 2014 Jul;35(7):1518-27. doi: 10.1016/j.ridd.2014.04.009. Epub 2014 Apr 20.
7
Ten great public health achievements--United States, 2001-2010.十个重大公共卫生成就——美国，2001-2010 年。
MMWR Morb Mortal Wkly Rep. 2011 May 20;60(19):619-23.
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Advocacy groups and their role in rare diseases research.倡导组织及其在罕见病研究中的作用。
Adv Exp Med Biol. 2010;686:515-25. doi: 10.1007/978-90-481-9485-8_28.
9
Folic acid supplementation for the prevention of neural tube defects: an update of the evidence for the U.S. Preventive Services Task Force.叶酸补充剂预防神经管缺陷：美国预防服务工作组证据更新
Ann Intern Med. 2009 May 5;150(9):632-9. doi: 10.7326/0003-4819-150-9-200905050-00010.
10
Empowerment of patients: lessons from the rare diseases community.患者赋权：罕见病群体的经验教训。
Lancet. 2008 Jun 14;371(9629):2048-51. doi: 10.1016/S0140-6736(08)60875-2.