Rare disease registries: an initiative to establish vasculitis registry in Poland

AgnieszkaPadjas; JanSznajd; WojciechSzczeklik; KrzysztofWójcik; KatarzynaWawrzycka; JacekMusia?

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Rare disease registries: an initiative to establish vasculitis registry in Poland

机译：罕见病登记处：在波兰建立血管炎登记处的举措

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《Polish Archives of Internal Medicine 》 |2014年第3期| 共2页
作者
AgnieszkaPadjas; JanSznajd; WojciechSzczeklik; KrzysztofWójcik; KatarzynaWawrzycka; JacekMusia?;
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1. National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) [J] . Verónica Alonso, Ignacio Abaitua, óscar Zurriaga, Orphanet journal of rare diseases . 2014 ,第S1期

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2. A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry [J] . Monica Mazzucato, Laura Visonà Dalla Pozza, Silvia Manea, Orphanet journal of rare diseases . 2014 ,第S1期

机译：以人群为基础的注册表作为稀有疾病健康指标的来源：威尼托大区稀有疾病注册表的十年经验
3. A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry [J] . Monica Mazzucato, Laura Visonà Dalla Pozza, Silvia Manea, Orphanet journal of rare diseases . 2014 ,第46期

机译：以人群为基础的注册表作为稀有疾病健康指标的来源：威尼托大区稀有疾病注册表的十年经验
4. Establishment of New National Rare Disease (Nambyo) Registry and Registry Guidelines in Japan [C] . Hiroshi Mizushima, Mai Tanabe, Yasutaka Sugamori, MEDINFO . 2017

机译：建立新的国家稀有疾病（NAMBYO）登记处和日本登记指南
5. Imputation based methods for incidence rate estimation of rare diseases from federal and state mortality data supplemented with disease registry data [D] . Jalal, Kabir 2015

机译：基于归因法的联邦和州死亡率数据与疾病登记数据相结合的罕见病发病率估算方法
6. National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) [O] . Verónica Alonso, Ignacio Abaitua, Óscar Zurriaga, 2014

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7. National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) [O] . 2014

机译：西班牙国家稀有疾病注册管理机构：西班牙罕见病注册管理机构研究网络（SpainRDR）的试点研究

Rare disease registries: an initiative to establish vasculitis registry in Poland

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