Epidemiological characteristics of the hospitalized patients with rare disease in northern Henan Province from 2003 to 2013

Ma Nan; Wang Keyan; Jiang Jicheng; Qu Yanhong; Yang Qian; Wang Shuaibing; Dong Kaiyan; Nie Wei

doi:10.3969/j.issn.1004-437X.2016.04.002

Abstract：Objective To assess the epidemiological characteristics of rare diseases in northern Henan Province,providing clues for more intensive research;to ascertain the high risk population and their main types,providing basis for the allocation of health resources and providing evidence for prevention measures. Methods The clinical data of rare diseases in tertiary hospitals in northern Henan Province from 2003 to 2013 were retrospectively collected and analyzed by using descriptive statistic method af-ter screening the ICD - 10 code of rare diseases and patients’home addresses. Results There were totally 55 675 hospitalized patients with rare disease and 1 560 kinds of diseases,including 30 401 male patients(54. 6% )and 25 274 female patients (45. 4% )in northern Henan Province from 2003 to 2013. The number of patients was increased dramatically from 494 in 2003 to 12 406 in 2013. The distribution of age was skewed,and the median age was 17(4,45)years old. The number of male pa-tients was larger than female in total,with a ratio of 1. 2∶1. The main affected group was 0 to 10 years old,with 23 254 patients (41. 8% ). The first three common rare diseases were congenital malformation and transformation and chromosome abnormality, blood and blood forming organ diseases and immunity mechanism - related diseases,and nervous system diseases,accounting for 31. 5% ,21. 5% and 31. 5% respectively. Conclusion The number of hospitalized patients with rare diseases had been in-creased since 2003 in northern Henan Province. Congenital malformation and transformation and chromosome abnormality,blood and blood forming organ diseases and immunity mechanism - related diseases,and nervous system diseases were the first three common rare diseases. Males and children from 0 to 10 years old were more susceptible.