This study is a prospective cohort study of children diagnosed with primary immunodeficiency disease (PID). The aim is to investigate the clinical characteristics and prognosis of PID in Chinese children.
Primary immunodeficiency disease (PID) is a group of rare and fatal disease. However, the research about clinical characteristics, treatment, management and prognosis of Chinese children with PID is still not perfect and there is no basic and large database. Therefore, this study is conducted, in order to set up a complete database and long term follow up of Chinese children with PID, and establish foundations for basic research and precise medicine. This study is divided into two parts. In part one, pediatric patients with PID in the past 10 years will be collected retrospectively by review medical records from these centers, and investigate the clinical features and prognosis. In part two, all new cases with suspected PID will be collected. Clinical symptoms, physical examination, blood tests, and humoral and cellular immune functions will be detected. Gene tests would be done when necessary to confirm the diagnosis. Then follow up at 6-moth, 1-year, 2-year, 3-year, 4-year and 5-year respectively. The trial will be completed in 60 months.
Study Type
OBSERVATIONAL
Enrollment
400
Frequencies of severe infection of children with PID
Times of severe infection attack will be recorded every year from baseline to 60 months, assessed by questionnaire
Time frame: 60 months
Life quality of children with PID
Life Quality Questionnaire, once for every year
Time frame: 60 months
Complications of children with PID
Time frame: 60 months
Long-term changes on lung function of children with PID
Time frame: 60 months
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