阅读说明：本技术 一种罕见病注册登记系统 (Rare disease registration system ) 是由 张抒扬 于 2019-12-03 设计创作，主要内容包括：本发明公开了一种罕见病注册登记系统,包括客户端和服务器端,客户端与服务器端进行数据交互；服务器端包括：罕见病知识库管理模块,用于整合来自多个数据源的罕见病相关数据并提供给用户；罕见病病例数据共享模块,用于统计每种罕见病的病例数据以供用户查看；以及罕见病注册登记业务子系统,包括：用户身份认证模块,管理各类用户的用户注册信息,并且当用户登录业务子系统时对用户的用户注册信息进行验证；工作台模块,提供用户进行疾病研究时使用的工具集；群组管理模块,管理用户创建的研究群组；以及表单模板管理模块,管理与每种罕见病相关的研究表单模板。本发明能够辅助研究人员开展有效的罕见病研究,进而提升罕见病的诊断效率。(The invention discloses a rare disease registration system, which comprises a client and a server, wherein the client and the server perform data interaction; the server side includes: the rare disease knowledge base management module is used for integrating rare disease related data from a plurality of data sources and providing the data to a user; the rare disease case data sharing module is used for counting case data of each rare disease for a user to view; and a rare disease registration service subsystem comprising: the user identity authentication module manages user registration information of various users, and verifies the user registration information of the users when the users log in the service subsystem; the workbench module is used for providing a tool set used by a user for disease research; the group management module is used for managing a research group created by a user; and a form template management module that manages study form templates associated with each rare disease. The method can assist researchers to carry out effective rare disease research, and further improve the diagnosis efficiency of rare diseases.)

1. A rare disease registration system is characterized by comprising a client and a server which is in communication connection with the client,

the client side performs data interaction with the server side through a Web browser; and

the server side includes:

a rare disease knowledge base management module for integrating rare disease-related data from a plurality of data sources and providing the rare disease-related data to a user in response to a request by the user;

the rare disease case data sharing module is used for counting case data of each rare disease for the user to view; and

a rare disease registration service subsystem comprising: the user identity authentication module is used for managing user registration information of various users and verifying the user registration information of the user when the user logs in the rare disease registration service subsystem; a workbench module providing a tool set used by the user for disease research; the group management module is used for managing the single-center research group and the multi-center research group created by the user; and a form template management module that manages study form templates associated with each rare disease.

2. The rare disease registration system of claim 1, wherein the rare disease registration service subsystem further comprises: and the metadata management module is used for managing metadata and a dictionary which are required by the user when the user designs the research form template, wherein the metadata comprises public metadata and private metadata, and the dictionary comprises a public dictionary and a private dictionary.

3. The rare disease registration system of claim 1, wherein the rare disease registration service subsystem further comprises: and the workflow management module is used for combining a plurality of research form templates related to each rare disease into a complete research form as a workflow.

4. The rare disease registration system of claim 1, wherein the workstation module comprises: a rare disease addition unit for adding a rare disease to be studied; and the case adding unit is used for adding the cases of the rare diseases to be researched and recording related information of the cases through the corresponding research form template.

5. The rare disease registration system of claim 4, wherein the workstation module further comprises: and the study queue starting unit is used for uploading a starting file to check whether the newly added rare diseases to be studied meet the study conditions, and if the check is passed, allowing the cases of the rare diseases to be studied to be added to study the rare diseases to be studied.

6. The rare disease registration system of claim 1, wherein the rare disease case data sharing module revises shared data in real time according to newly added rare diseases and case data of the rare disease registration service subsystem.

7. The rare disease registration system of claim 6, wherein the rare disease case data sharing module displays a geographical distribution of the shared data in a map distribution and displays an age distribution of the shared data in a graph.

8. The rare disease registration system of claim 1, wherein the group management module deletes, creates, applies for joining, or agrees to join the single-center study group or the multi-center study group in response to the user's request.

9. The rare disease registration system of claim 1, wherein the form template management module adds, deletes, searches, designs, previews, modifies, exports backups, restores backups, or publishes the study form template in response to the user's request.

10. The rare disease registration system of claim 1, wherein the rare disease registration service subsystem further comprises: and the follow-up visit management module is used for setting a follow-up visit plan and follow-up visit reminding.

Technical Field

The invention relates to the technical field of medical information systems, in particular to a rare disease registration system.

Background

The rare diseases are called 'rare diseases' for short, also called 'orphan diseases', and the name suggests that the disease rate is very low and the diseases are rare. Most rare diseases are chronic and serious diseases that are often life threatening. Approximately 80% of rare diseases are caused by genetic defects, and thus rare diseases are generally referred to as "rare genetic diseases". According to the report of the World Health Organization (WHO), more than 5000 recognized rare diseases exist at present, and account for about 10% of the human disease types; about 50 percent of rare diseases can be attacked at birth or in childhood, the disease condition is usually and rapidly progressed, the death rate is high, most of the diseases have no effective treatment method, and great pain is caused to patients.

The rare diseases are relative, dynamic and variable concepts, the definition and the division of the rare diseases do not have a unified standard in different countries and regions of the world, and different definitions of the rare diseases in each country are related to the population, the economic development level, the incentive policy of research and development of rare medicines and the coverage range of diagnosis and treatment costs of the rare diseases. China medical society of medicine, genetics, in 5 and 17 months 2010, held up a conference of related experts in Shanghai, agreed on Chinese rare disease definitions: considering that the population base of China is large, referring to the incidence rate of the rare diseases of regions such as hong Kong and Taiwan and surrounding countries such as Japan, the disease rate of the rare diseases is defined as less than one fiftieth of ten-thousandth; a genetic disease with a prevalence of less than one in ten thousand in newborns can be defined as a rare genetic disease.

Although the incidence rate of the rare diseases is extremely low and the incidence area is uncertain, the research on the rare diseases cannot be ignored. However, most research institutions currently create a system for research and management of a certain disease. Most of these systems employ the system architecture of C/S. Only single research disease management can be realized, multi-center management cannot be realized, and related operations such as coordination work, case sharing and the like among different medical institutions cannot be realized. In addition, data among various research institutions form data islands, and the scattering of the same rare disease research data in different medical institutions cannot form a scale sample, which is the biggest problem in rare disease research at present. At present, each medical institution rare disease research system mainly comprises functions of case registration, case entry and the like. Analysis of disease data, data integration, etc. do not have relevant functions.

In summary, in view of the problems in the prior art, there is an urgent need in the art for a systematic scientific research system integrating rare disease case information registration, case information analysis, and rare disease research.

Disclosure of Invention

In view of this, an embodiment of the present invention provides a rare disease registration system, which can solve the problems that the existing system cannot register information of rare disease cases, analyze case information, and effectively research rare diseases.

In view of the above objects, an aspect of the embodiments of the present invention provides a rare disease registration system, which includes a client and a server communicatively connected to the client,

the client side performs data interaction with the server side through a Web browser; and

the server side includes:

a rare disease knowledge base management module for integrating rare disease-related data from a plurality of data sources and providing the rare disease-related data to a user in response to a request by the user;

the rare disease case data sharing module is used for counting case data of each rare disease for the user to view; and

a rare disease registration service subsystem comprising: the user identity authentication module is used for managing user registration information of various users and verifying the user registration information of the user when the user logs in the rare disease registration service subsystem; a workbench module providing a tool set used by the user for disease research; the group management module is used for managing the single-center research group and the multi-center research group created by the user; and a form template management module that manages study form templates associated with each rare disease.

The rare disease registration service subsystem of the rare disease registration system described above preferably further comprises: and the metadata management module is used for managing metadata and a dictionary which are required by the user when the user designs the research form template, wherein the metadata comprises public metadata and private metadata, and the dictionary comprises a public dictionary and a private dictionary. Thus, support is provided for faster production of research forms.

The rare disease registration service subsystem of the rare disease registration system described above preferably further comprises: and the workflow management module is used for combining a plurality of research form templates related to each rare disease into a complete research form as a workflow. Therefore, the method helps researchers to simply and quickly produce attractive and practical research forms.

The rare disease registration system described above, preferably, the workstation module comprises: a rare disease addition unit for adding a rare disease to be studied; and the case adding unit is used for adding the cases of the rare diseases to be researched and recording related information of the cases through the corresponding research form template.

The rare disease registration system described above, preferably, the workstation module further comprises: and the study queue starting unit is used for uploading a starting file to check whether the newly added rare diseases to be studied meet the study conditions, and if the check is passed, allowing the cases of the rare diseases to be studied to be added to study the rare diseases to be studied.

In the rare disease registration and registration system, preferably, the rare disease case data sharing module corrects shared data in real time according to newly added rare diseases and case data of the rare disease registration and registration service subsystem.

In the rare disease registration and registration system described above, preferably, the rare disease case data sharing module displays the geographical distribution of the shared data in the form of map distribution and displays the age distribution of the shared data in the form of a graph. Thus, the user can be made to be clear at a glance.

The rare disease registration system described above, preferably, the group management module deletes, creates, applies for joining, or agrees to join the single-center study group or the multi-center study group in response to the request of the user. Therefore, sharing and cooperative work of the disease cases in the group can be realized.

In the rare disease registration system described above, the form template management module preferably adds, deletes, searches, designs, previews, modifies, exports backups, restores backups, or issues the study form template in response to a request from the user.

The rare disease registration service subsystem of the rare disease registration system described above preferably further comprises: and the follow-up visit management module is used for setting a follow-up visit plan and follow-up visit reminding.

Advantageous effects

The rare disease registration and registration system provided by the invention can realize integration and analysis research of rare disease resources, so that the improvement of the clinical diagnosis and treatment capacity of rare diseases is further promoted.

Drawings

FIG. 1 is an architectural diagram of a rare disease registration system according to one embodiment of the invention;

FIG. 2 is a schematic block diagram of a server side of a rare disease registration system according to one embodiment of the present invention; and

fig. 3 is a schematic block diagram of a server-side rare registration service subsystem according to one embodiment of the present invention.

Detailed Description

The following examples are intended to illustrate the invention but are not intended to limit the scope of the invention. Unless otherwise specified, the technical means used in the examples are conventional means well known to those skilled in the art.

In view of the above, the embodiment of the present invention provides an embodiment of a rare disease registration system. The rare disease registration system adopts a B/S (Browser/Server) framework, and the B/S framework adopts a working mode of Browser request and Server response. Fig. 1 is a schematic configuration diagram of the rare disease registration system of the embodiment. As shown in FIG. 1, the rare disease registration system includes a client 101 and server sides 102-104 communicatively connected (e.g., via the Internet) to the client 101. In the embodiment, the server side includes three servers, which are the Web server 102, the application server 103, and the database server 104, however, the Web server 102 and the application server 103 may be a single server. The rare registration system software of the present invention can be run on the application server 103. The database server software used in this embodiment may be in a version of mysql5.0 or more. The client 101 performs data interaction with the server through the Web browser. The client browser can be various mainstream browsers such as IE, Firefox, Google Chrome and the like. The client 101 shown in fig. 1 is by way of example only and those skilled in the art will appreciate that it may be a mobile APP on any mobile device.

Fig. 2 is a schematic block diagram of a server side of a rare disease registration system according to one embodiment of the present invention. As shown in fig. 2, the server 20 may include: the rare disease knowledge base management module 201 is used for integrating rare disease related data from a plurality of data sources and providing the rare disease related data for a user in response to a request of the user, for example, the rare disease knowledge base management module 201 can release related research results of a researcher for one or more rare diseases or release propaganda and education knowledge, and the like, and in addition, the module can integrate precise medical platforms, such as precise medical platforms, GeneReviews, CHPO, GeneCards, MalaCards and the like, and databases to provide more convenient tools for use, so that the steps can be performed to a plurality of medical platforms and databases on one platform, and the researcher can search the corresponding databases more conveniently and quickly to search required data of the researcher; the rare disease case data sharing module 202 is used for counting case data of each rare disease for a user to view; and a rare registration service subsystem 203. As shown in fig. 3, the rare disease registration service subsystem may include: the user identity authentication module 301 manages user registration information of various users, and verifies the user registration information of the user when the user logs in the rare disease registration service subsystem; a workbench module 302 that provides a tool set for use by a user in conducting disease studies; the group management module 303 is used for managing a single-center research group and a multi-center research group created by a user; and a form template management module 304 that manages study form templates associated with each rare disease.

The rare disease knowledge base management module 201 can integrate different medical websites together, and jump to a plurality of medical websites on one platform, so that the desired data can be inquired more conveniently and rapidly. On the other hand, one of the main objectives of the study of rare diseases is to provide guidance for the treatment of specific rare diseases. A wealth of knowledge can be developed during the course of the study, and all of this knowledge can be used to guide the treatment of rare diseases. Thus, the rare disease knowledge base management module 201 allows researchers to record, publish relevant results of a study, or published educational knowledge, etc. The rare disease knowledge base management module 201 provides functions of knowledge extraction, editing, publishing, withdrawing, modifying and the like. And receiving the editing and modification of others in the form of entries.

In a preferred embodiment, the rare disease case data sharing module 202 revises the shared data in real time according to the newly added rare diseases and case data of the rare disease registration service subsystem 203. The rare disease case data sharing module 202 displays the geographical distribution of the shared data in the form of map distribution and displays the age distribution of the shared data in the form of a graph. Meanwhile, statistics of the number of diseases of men and women can be respectively displayed. The map distribution adopts the ECharts technology and the thermal distribution technology, presents different colors according to different numerical values and is clear for users. In addition, both the geographical map and the chart can be downloaded and saved as pictures.

The user identity authentication module 301 performs identity authentication through a unified user management mechanism, and determines access content (access right) of the user. The personal user password supports end-to-end encryption through the security control, and the password is stored after being encrypted; and limits the number of consecutive login failures.

The stage module 302 may include: a rare disease addition unit for adding a rare disease to be studied; and the case adding unit is used for adding cases of the rare diseases to be researched and recording related information of the cases through corresponding research form templates. Further, the workbench module 302 may further include: and the research queue starting unit is used for uploading a starting file to check whether the newly added rare diseases to be researched meet the research conditions, and if the check is passed, allowing the cases of the rare diseases to be researched to be added to research the rare diseases to be researched.

In a preferred embodiment, the rare disease registration service subsystem further comprises: and the metadata management module is used for managing metadata and a dictionary which are needed when a user designs a research form template, wherein the metadata comprises public metadata and private metadata, and the dictionary comprises a public dictionary and a private dictionary. The common metadata includes some common basic information, such as: name, gender, age, date of birth, identification number, contact address, etc. The private metadata corresponds to the public metadata, and is specific data belonging to a specific disease category. The definition of the metadata comprises metadata name definition, presentation mode definition and standard data contrast items corresponding to the metadata. The metadata management includes: metadata addition, editing, format definition, deletion, export backup, restore backup, search, and the like. When making a disease form, a user usually uses some data items with option types, such as metadata of gender, which has three options: male, female, and unknown, the user needs to add a dictionary to this metadata and set value fields to the dictionary. The dictionary management comprises the following steps: adding dictionary information, editing, deleting, searching, exporting backup, restoring backup and the like. The value range information includes: name, code, input code, operation, etc.

In a preferred embodiment, the rare disease registration service subsystem further comprises: and the workflow management module is used for combining a plurality of research form templates related to each rare disease into a complete research form as a workflow. The workflow management module and form template management module 304 are closely coupled to the metadata management module. In other words, after the researchers add the metadata, the form template management module 304 can design a form template by using the added metadata, and then splice a plurality of designed form templates with a rare disease into a workflow, where one workflow corresponds to a complete disease research form.

In a preferred embodiment, the group management module deletes, creates, applies for or approves the joining of a single-center research group or a multi-center research group in response to a user's request. The user can also invite other users to join the own group through the group management module, and can only invite users belonging to the same hospital and users studying the same disease with the group.

In a preferred embodiment, the form template management module adds, deletes, searches, designs, previews, modifies, exports backups, restores backups, or publishes research form templates in response to a user's request. The rare disease registration service subsystem 203 may further include: and the follow-up visit management module is used for setting a follow-up visit plan and follow-up visit reminding. Setting the follow-up plan includes setting information such as a follow-up interval time, a follow-up mode, a reservation advance time, and a follow-up program (workflow form).

In addition, the apparatuses, devices and the like disclosed in the embodiments of the present invention may be various electronic terminal devices, such as a mobile phone, a Personal Digital Assistant (PDA), a tablet computer (PAD), a smart television and the like, or may be large terminal devices, such as a server and the like, and therefore the scope of protection disclosed in the embodiments of the present invention should not be limited to a specific type of system or device.

Those of skill would further appreciate that the various illustrative logical blocks, modules, circuits, and algorithm steps described herein may be implemented as electronic hardware, computer software, or combinations of both. To clearly illustrate this interchangeability of hardware and software, various illustrative components, blocks, modules, circuits, and steps have been described above generally in terms of their functionality. Whether such functionality is implemented as software or hardware depends upon the particular application and design constraints imposed on the overall system. Skilled artisans may implement the described functionality in varying ways for each particular application, but such implementation decisions should not be interpreted as causing a departure from the scope of the disclosed embodiments of the present invention.

The various illustrative logical blocks, modules, and circuits described herein may be implemented or performed with the following components designed to perform the functions described herein: a general purpose processor, a Digital Signal Processor (DSP), an Application Specific Integrated Circuit (ASIC), a Field Programmable Gate Array (FPGA) or other programmable logic device, discrete gate or transistor logic, discrete hardware components, or any combination of these components. A general purpose processor may be a microprocessor, but in the alternative, the processor may be any conventional processor, controller, microcontroller, or state machine. A processor may also be implemented as a combination of computing devices, e.g., a combination of a DSP and a microprocessor, a plurality of microprocessors, one or more microprocessors in conjunction with a DSP, and/or any other such configuration.

Although the invention has been described in detail hereinabove with respect to a general description and specific embodiments thereof, it will be apparent to those skilled in the art that modifications or improvements may be made thereto based on the invention. Accordingly, such modifications and improvements are intended to be within the scope of the invention as claimed.