Study On Establishment And Application Strategy Of Registies For Pediatric Diseases

Disease registry system is an important part of the national healthsystem. The establishment of registries will enable us to conduct largescale prospective and retrospective clinical trials, which has played a veryimportant role in both national and regional policy making. In our countrythere has no registry system designed just for pediatric diseases which istotally different from the adult disease, therefore leads to the lack ofevidence for related policy making. With the implementation of the newrural cooperative medical system, treatment protocol, curative effect, costand prognosis of congenital heart diseases (CHD) and childhoodleukemia which is major threat to child health and development of societyin China has become focus issues in areas of public management andpublic health.Through literature review and expert interviews, this study takes CHD and childhood leukemia as examples to provide the theoretical basisfor establishing the registry system for pediatric diseases aiming atdisease distribution investigation, practice routine and treatment protocolstandardization, cost reduction to release economic burden on familiesand society, and eventually to optimize the health resources allocation.The research shows that China has not yet established registries forpediatric diseases to the whole nation, policies, systems and applicationpromotion, also did not established, and it is unable to pursue theimplementation of registries for pediatric diseases. Through the currentstatus of registries for pediatric diseases along with the experience andpractice from abroad, this study ultimately proposed the idea of establishregistries for pediatric diseases suitable for China’s national conditions,including both top-level design and module functions, thereby to obtainepidemiological data from nation-wide information sharing in order toput forward the application strategy and provide evidence in policymaking for child health in China.