[Current status and challenges of registry-based research on rare respiratory diseases in China]
1Department of Respiratory and Critical Care Medicine, The Second Xiangya Hospital of Central South University, Research Unit of Respiratory Disease, Central South University, Hunan Diagnosis and Treatment Center of Respiratory Disease, Hunan Clinical Medical Research Center for Pulmonary and Critical Care Medicine, Changsha 410011, China.
Abstract:
Respiratory rare diseases are a category of conditions related to the respiratory system that have a low incidence rate. Patients with these diseases are at high risk of misdiagnosis or missed or delayed diagnosis during diagnosis and treatment, and the lack of effective treatment options can lead to a significant deterioration in their quality of life and increased risk of mortality. Conducting registry research on respiratory rare diseases can help outline the natural history of these diseases, evaluate the effectiveness and safety of clinical treatments, and assess the quality of healthcare. This makes registry research a critical measure for improving the prognosis of rare disease patients. This paper examines the current status of registry research on respiratory rare diseases, discusses the challenges encountered during its implementation, and offers relevant suggestions for further advancing this research.
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