Study and analysis of the state of rare disease research in Henan Province
Ma Nan
Li Xiangxu
Nie Wei
Guo Yongjun
Wang Kaijuan
Song Chunhua
Abstract：Objective To study the state of rare disease research and survey doctors in Henan Province regarding their levels of awareness of rare diseases.Methods Types of rare diseases and numbers of cases were tallied and their geographical distribution over the decades was analyzed.391 doctors in tertiary hospitals and maternity and child care hospitals were surveyed by questionnaires.Data were descriptively analyzed and a picture of disease distribution was created.Results This study yielded 3 316 cases of 241 different types of rare diseases.The survey found that doctors lacked awareness of research on rare diseases.An authoritative and information -rich platform for rare disease research was urgently needed.Conclusion Key steps are to study epidemiological and statistical tech-niques and then obtain available data to provide a basis for the definition and regulation of rare diseases in China.
Keywords：rare diseasecognitive surveydistribution description
Publication Date：2016-01-01
Online Publishing Date：2026-09-12(First online date of this platform, not the publication date of the document)
Pages：4( 385-388 )