2023-12-19
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On December 17, the Standard Dataset for Paediatric rheumatic and immunological diseases (hereinafter referred to as the "Dataset") edited by the Pediatric of Peking Union Hospital was officially released. As one of the key achievements of the "14th Five-Year Plan" national key research and development plan led by Xiehe Pediatrics, this dataset is the first in China to provide an operable and standardized data structure for children's rheumatology and immunology major. It will comprehensively improve data quality, promote resource sharing, and promote multi-center collaboration. Zhao Kaili, director of the Research Center for the Development of Medicine and Health Science and Technology of the National Health and Family Planning Commission, and Wang Tianyou, director of the Pediatric Branch of the Chinese Medical Association attended the press conference. Wu Peixin, party secretary of Peking Union Hospital, attended the meeting and delivered a speech.
Secretary Wu Peixin said that the Dataset has laid a solid foundation for the implementation and management of the "14th Five-Year Plan" project in pediatrics. He hoped that the dynamic management would be implemented under the premise of paying attention to comprehensiveness, diversity and professionalism, and that standards, norms, techniques and guidelines would be further formed to provide a scientific basis for disease prevention and treatment. Director Zhao Kaili congratulated the team on its important achievements. The release of the Dataset led by Xiehe Pediatrics provided an important basis and support for solving the big data challenges in this field, comprehensively improving the data quality, promoting resource sharing, and promoting multi-center collaboration.
▲ Experts at the meeting unveiled the Dataset together, from left to right were: Professor Wu Xiaochuan from Xiangya No.2 Hospital, Director Zhao Kaili from National Health and Hygiene Commission, Professor Zhang Fengchun, former chairman of Rheumatology Credit Association of Chinese Medical Association, Party Secretary Wu Peixin from Peking Union Hospital, Professor Wang Tianyou, chairman of Pediatrics Branch of Chinese Medical Association, Professor Song Hongmei from Peking Union Hospital, Professor Gong Meng Chun, senior vice president of DHC, and Professor Mao Huawei from Beijing Children's Hospital
Professor Song Hongmei, the editor-in-chief, said that the team had drawn on authoritative domestic and foreign textbooks, evidence-based guidelines and expert consensus during the compilation process, which had condensed the diagnosis and treatment experience and painstaking efforts of multi-center children's rheumatology immunology experts across the country. The Dataset provided 614 data elements in 20 categories and 23 data dictionaries for children with rheumatic immune diseases, covering clinical and research information such as common clinical manifestations, specific examinations, therapeutic drugs, genes, and highlighting the special growth and development status of children and its impact on diagnosis and treatment, as well as the role of genetic factors in the pathogenesis.
The Datasets were jointly prepared by Peking Union Medical College Hospital, Children's Hospital Affiliated to Chongqing Medical University, Xiangya No.2 Hospital of Central South University, Peking Children's Hospital Affiliated to Capital Medical University, Shenzhen Children's Hospital, Children's Hospital Affiliated to Nanjing Medical University, and Children's Hospital Affiliated to Medical College of Zhejiang University, with technical support from DHC.
The team also synchronously established a high-quality and standardized China Children's Immune Disease Research Network Platform, which will give full play to the important role of health care big data as a national strategic resource, and work with datasets to promote the standardization construction of medical data, medical quality control and homogenization management of children's rheumatic diseases.
As a participating unit of the national key research and development plan "Establishment and application of accurate diagnosis and treatment system for childhood immune diseases" of the "Reproductive Health and Women's and Children's Health Insurance" special project, DHC provided technical support for the Standard Dataset for Paediatric Rheumatic and Immunological Diseases. At present, with the technical support from DHC, a number of authoritative medical institutions such as Peking Union Medical College Hospital have established high-quality special disease cohort database and multi-center collaboration network platform, carried out multi-dimensional standardized integration, data in-depth mining and multi-scenario application, and carried out real-world research on children's rheumatic immune diseases. In the future, data resources of different alliance hospitals will also be supported, and connection and interaction will be conducted through the data sharing platform of multi-center disease database, to provide data and technical basis for follow-up multi-center research based on real-world data, to promote the standardization construction of data on childhood rheumatic diseases, and to lay a solid foundation for the standardized clinical diagnosis and multi-center research on childhood rheumatic diseases in China.
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