Rare disease registration system

Abstract

The invention discloses a rare disease registration system. The system comprises a client and a server end; the client and the server end perform data interaction; the server end comprises a rare disease knowledge base management module which is used for integrating rare disease related data from a plurality of data sources and providing the rare disease related data for a user; a rare disease case data sharing module which is used for counting case data of each rare disease for a user to check; and a rare disease registration service subsystem. Therare disease registration service subsystemcomprises a user identity authentication module used for managing user registration information of various users and verifying the user registration information of the users when the users log in the service subsystem; a workbench module used for providing a tool set used by a user during disease research; a group management module used for managing the research group created by the user; and a formtemplate management module used for managing the research form template related to each rare disease. According to the invention, researchers can be assisted to carry out effective rare disease research, so that the diagnosis efficiency of rare diseases is improved.

Description

technical field [0001] The invention relates to the technical field of medical information systems, in particular to a rare disease registration system. Background technique [0002] Rare diseases are referred to as "rare diseases" for short, also known as "orphan diseases". Most rare diseases are chronic, severe conditions that are often life-threatening. About 80% of rare diseases are caused by genetic defects, so rare diseases generally refer to "rare genetic diseases". According to the report of the World Health Organization (WHO), there are more than 5,000 recognized rare diseases, accounting for about 10% of human diseases; about 50% of rare diseases can occur at birth or in childhood, and the disease often progresses Rapidly, the mortality rate is very high, and most of them still have no effective treatment method, which causes great suffering to the patients. [0003] Rare disease is a relative, dynamic, and changing concept. Different countries and regions in th...

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Problems solved by technology

[0006] In view of this, the purpose of the embodiment of the present invention is to propose a rare disease registration system, which can solve the problems that the existing system cannot realize rare disease case information registration, case information analysis, and effective research on rare diseases.

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