CN110838369A - System for be used for rare disease research - Google Patents
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- 208000035977 Rare disease Diseases 0.000 title claims abstract description 81
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- G16H50/00—ICT specially adapted for medical diagnosis, medical simulation or medical data mining; ICT specially adapted for detecting, monitoring or modelling epidemics or pandemics
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Abstract
The invention discloses a system for rare disease research, comprising: the system comprises a user identity authentication and authority management module, an audit management module, a metadata management module, a form template management module, a genotype acquisition module, a rare disease case data management module and an analysis module, wherein the form template management module is in communication connection with the metadata management module, the rare disease case data management module is in communication connection with the form template management module and the genotype acquisition module, and the analysis module is in communication connection with the rare disease case data management module. The invention can efficiently and comprehensively collect the rare disease cases to be researched according to the research purpose, and combines the computer technology to develop the research of the possible interaction of the genes and the environment in the disease occurrence, thereby improving the diagnosis efficiency of the rare diseases.
Description
Technical Field
The invention relates to the technical field of medical information, in particular to a system for rare disease research.
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.
For researchers, a large sample of case data must be based on when conducting rare disease studies. However, most research institutions currently create a system for managing the research of a certain disease. The systems are used for assisting research, only can realize case data acquisition and disease research in a single small range, cannot acquire effective information from mass data, and cannot realize related operations such as coordination work, case sharing and the like among different medical institutions. Because research schemes and required data of different rare diseases are different, researchers need to spend a lot of time and energy to make corresponding research forms to collect corresponding data when researching different rare diseases, and great inconvenience is brought to the researchers. 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. Further, with the continuous development of molecular genetic technology, genetic-environmental interaction (gene-environmental interaction) is becoming increasingly important in the study of rare causes of diseases and diseases. The traditional research methods or systems can be used for evaluating the interaction of the two methods or systems, but the methods or systems cannot achieve higher statistical analysis efficiency.
In summary, in view of the problems in the prior art, there is a need in the art for a solution for realizing convenient, efficient and comprehensive registration of rare disease cases based on an internet platform and performing efficient research on rare diseases on a macro-level and a micro-level by analyzing the interaction between genes and the environment during disease occurrence.
Disclosure of Invention
In view of this, an object of the embodiments of the present invention is to provide a system for rare disease research, which can solve the problems that the prior art cannot realize convenient, efficient, and comprehensive registration of rare disease cases and efficiently analyze the interaction between genes and the environment in rare disease occurrence.
In view of the above objects, an aspect of the embodiments of the present invention provides a system for rare disease research, comprising:
the user identity authentication and authority management module is used for managing a user account and access authority;
the auditing management module is used for forwarding a file to be audited, which is uploaded to the system after a user applies for researching related rare diseases, to a user with auditing authority for auditing;
the metadata management module is used for designing and generating metadata and a dictionary aiming at the related rare diseases;
the form template management module is in communication connection with the metadata management module and is used for manufacturing a research form by using the metadata and the dictionary;
the genotype collection module is used for collecting biological samples of the cases of the related rare diseases and processing the biological samples by adopting a polymerase chain reaction-restriction fragment length polymorphism analysis technology to detect the related genotypes, wherein the cases are new cases which accord with a preset unified diagnosis standard and have specified self characteristics;
a rare disease case data management module which is in communication connection with the form template management module and the genotype acquisition module and is used for inputting environmental exposure factors and miscellaneous variables which are daily contacted with the cases before or before the cases occur into the research form, collecting the related genotypes and grouping the cases according to the existence or the grade of the related genotypes and the environmental exposure factors, wherein the related genotypes and the environmental exposure factors occur independently in normal people; and
an analysis module communicatively coupled to the rare disease case data management module and configured to analyze interactions of the correlated genotypes with the environmental exposure factors in the occurrence of the correlated rare disease using a non-conditional Logistic regression analysis model based on the environmental exposure factors, the confounding variables, and the correlated genotypes.
In the system for rare disease research described above, preferably, the document to be reviewed includes an application document, a scheme writing group member list, an argumentation expert group list, and a startup document.
The system for rare disease study described above preferably wherein the application file comprises an applicant's resume, an application, a disease presentation, diagnostic criteria, a study protocol, a study form, a list and entity of formulators of study protocols and study forms, a demonstration report of study protocols and study forms, and the startup file comprises ethical lots and informed consent.
The system for rare disease research described above, preferably, the metadata comprises public metadata and private metadata and the dictionary comprises a public dictionary and a private dictionary.
In the system for rare disease research described above, preferably, the metadata management module is specifically configured to add, edit, format define, delete, backup export, restore, and search the metadata; and addition, editing, deletion, backup export, restoration and search of the dictionary.
In the system for rare disease research described above, preferably, the form template management module is specifically configured to design a plurality of study form templates for the related rare diseases using the metadata and the dictionary, and then combine the plurality of study form templates into the study form.
Advantageous effects
The system for rare disease research provided by the invention can assist researchers to design the research form template in an autonomous and visual manner, help the researchers to produce beautiful and practical research forms more simply and more quickly, effectively collect relevant case data by using the research forms, then gather the case data collected by the researchers in hospitals and research institutions, and clean, convert and load the data through the data processing center. Through data processing, an authoritative and timely updated general and special medical data database is formed, a medical data center is constructed, and data retrieval can be directly carried out on the data center. In addition, the system of the invention is suitable for the research of rare diseases (at the moment, the RR value can be estimated by using the OR value), the credible interval is narrower when the interaction between the detection gene and the environment is detected, the required sample amount is small, the research object only consists of the patients with the researched diseases, the data of a normal control group is not required to be collected, the research efficiency is improved, the research difficulty is reduced, and the control group is not available, so that the bias caused by control selection is avoided, and meanwhile, the manpower, material resources and time are saved and the implementation is easy.
Drawings
FIG. 1 is a schematic block diagram of a system for rare disease studies 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 present invention provides an embodiment of a system for rare disease research, which employs a B/S (Browser/Server) architecture, the B/S architecture employs an operation mode of Browser request and Server response, the genotype and environmental exposure factors studied by the system are independent from each other in the normal population, i.e., there should be no correlation between them, and the disease under study should be rare (in this case, the RR value can be estimated by using the OR value). Fig. 1 is a schematic block diagram of the system for rare disease research of this embodiment. As shown in fig. 1, the system 101 for rare disease studies comprises: the user identity authentication and authority management module 102 is used for managing a user account and access authority; the auditing management module 103 is used for forwarding the file to be audited, which is uploaded to the system 101 after the user applies for researching the related rare diseases, to the user with auditing authority for auditing; a metadata management module 104 for designing and generating metadata and a dictionary for the related rare diseases; a form template management module 105 communicatively coupled to the metadata management module 104 and configured to produce a research form using the metadata and the dictionary; a genotype collection module 108 for collecting a biological sample of the case of the related rare disease and processing the biological sample using polymerase chain reaction-restriction fragment length polymorphism analysis to detect a related genotype; a rare disease case data management module 106, communicatively connected to the form template management module 105 and the genotype collection module 108, and configured to record environmental exposure factors and confounding variables, which have been or are routinely exposed before the onset of the case, into the study form, collect the relevant genotypes, and group the cases according to the presence or absence or level of the relevant genotypes and the environmental exposure factors, so that after grouping, each environmental exposure factor and each genotype can be analyzed and studied one by one for the presence or absence of interaction; and an analysis module 107 communicatively coupled to the rare disease case data management module 106 and configured to analyze interactions between the related genotypes and the environmental exposure factors in the occurrence of the related rare diseases using a non-conditional Logistic regression analysis model based on the environmental exposure factors, the confounding variables, and the related genotypes, e.g., Logistic regression analysis of case statistics for each group, and calculate or (oddratio) values and their 95% Confidence Intervals (CIs).
The cases are new cases meeting the unified diagnosis standards established in advance and having the specified characteristics (such as sex, age, nationality, and the like), for example, the diagnosis standards are well-defined or internationally universal diagnosis standards to prevent misdiagnosis or missed diagnosis from affecting the authenticity of the research results. In addition, the selection of cases is representative, and generally all the patients from a certain medical institution or community are selected, wherein the community source population has strong representativeness, but the difficulty of case collection is large, and the patients from the medical institution are clearly diagnosed, are easy to obtain the cooperation of the patients, but are easy to cause bias, and particularly, the bias caused by different sub-population environmental exposure rates and/or genotype frequencies is strictly prevented when the cases are selected. The new cases are selected because the onset time is close to the exposure time, the cases can better recall the exposure history, the recall bias can be effectively reduced, the new cases are not influenced by various survival factors, and the exposure rate of certain risk factors cannot be reduced due to the change of certain habits. The related genotype and the environmental exposure factor should occur independently in normal population, and the sample size of the case should be scientifically estimated by using a known calculation method according to the influence factors.
The specific operations of collecting the environmental exposure factors and the miscellaneous variables and entering the environmental exposure factors and the miscellaneous variables into the system 101 are as follows, a researcher inputs a pre-registered user name and password into the system 101, the user identity authentication and authority management module 102 verifies login information and distributes access authority, and after the login information is verified, the researcher can freely access the system module which is allowed to be accessed according to the authority. Next, it is determined whether the rare disease to be researched has been added to the system 101, if the rare disease to be researched already exists in the system 101, for example, if a person has researched the rare disease before and adds the rare disease to the system, then the later researchers do not need to add the rare disease again, and if the rare disease to be researched does not exist in the system 101, then the researchers need to perform an adding operation, for example, the researchers can search whether the rare disease to be researched exists in the system through a searching tool of the system. The main purpose of the investigator registering rare cases is to conduct subsequent studies, and therefore the investigator needs to check whether the study to be conducted satisfies the study conditions before registering the cases. To accomplish this, the researcher may compile documents of interest to be submitted, such as application documents, protocol writing group member lists, demonstration expert group lists, startup documents, and the like, wherein the application documents may include applicants' resumes, application books, disease presentations, diagnostic criteria, disease study protocols, research tables, research protocol and research table maker lists and units, research protocol and research table demonstration reports, and the startup documents may include ethical lots and informed consent. After the file is edited, the file is uploaded to the system 101, the audit management module 103 forwards the file to a researcher with audit authority for audit, and the researcher can register rare disease cases after the audit is passed. Firstly, metadata of a researcher is designed through the metadata management module 104, then the designed metadata is sent to the form template management module 105, the form template management module 105 utilizes the corresponding metadata and the dictionary to design a research form template, a plurality of designed research form templates of the same disease are spliced into a workflow, and one workflow is a complete disease research form. Meanwhile, the designed research form template can be stored in a local memory for later use. Finally, in the rare case data management module 106, the collected environmental exposure factors and confounding variables are entered into the corresponding study form template generated by the form template management module 105 to form a final complete study form. In addition, the genotype collection module 108 of the system 101 collects a biological sample of a case and then processes the biological sample using the PCR-restriction fragment length polymorphism analysis technique to detect the genotype of interest.
In a preferred embodiment, the user authentication and authorization management module 102 manages user registration information and access authorization of various users, and verifies the user registration information of the user when the user logs in the system. The user authentication and authorization management module 102 performs authentication through a unified user management mechanism to determine the access content (access authorization) 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.
After receiving the above-mentioned related file that needs to be submitted for researching a certain disease, the audit management module 103 forwards the file to the researcher with audit authority for audit, and returns the audit result to the researcher. Rare cases can be registered if the audit is passed, i.e. research work can be initiated and the relevant files described above need to be re-submitted if the audit is not passed.
The overall architecture of the metadata management module 104 is divided into: the system comprises a user layer, a display layer, an application layer, a data layer, a database and a hardware layer. The users of the system are divided into two categories: the system comprises a researcher and a manager, wherein the researcher can manage metadata and dictionaries required by form design of the researcher, and can also use existing public metadata and dictionaries in the system, and the public data needs to be maintained by system managers. The application layer of the system is mainly divided into the following applications: metadata management, comprising: the two types of public metadata and private metadata support the functions of metadata addition, editing, format definition, deletion, backup export, restoration, search and the like; dictionary management, also including: the public dictionary and the private dictionary support functions of adding, editing, deleting, backup exporting, restoring, searching and the like of the dictionary; a system log, comprising: the system comprises a metadata log, a dictionary log and the like, and is mainly used for recording data operation changes of important applications in the system. The metadata may include, for example, the patient's name, gender, age, region, contact, ethnicity, and so on. When making a disease form, a user typically uses data items having an option type, such as metadata with a gender, which has three options: male, female, unknown. The user needs to add a dictionary to this metadata and set a value field to the dictionary. The value range information includes: name, code, input code, operation, etc.
The overall system architecture of the form template management module 105 is divided into: the system comprises a user layer, a display layer, an application layer, a data layer, a database and a hardware layer. The user of the system is a researcher and a manager, the user can make a research form of the rare disease through the system, and the form template management module 105 particularly comprises a workflow management unit for simultaneously managing a plurality of workflows, for example, a plurality of designed research form templates of the same disease are spliced into one workflow, and one workflow is a complete disease research form. The main application of the system is as follows: form templates, workflow management, system logs, and the like. The application layer of the system is mainly divided into the following applications: form template management, which may maintain form template information, includes but is not limited to: operations such as adding, editing, deleting, searching, designing, previewing, backing up export, restoring and releasing; workflow management, which may maintain workflow information, includes but is not limited to: operations such as adding, editing, deleting, searching, designing, previewing, backing up export, restoring and releasing; a system log, comprising: the system comprises a form template log, a workflow log and the like, and is mainly used for recording data operation changes of important applications in the system.
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.
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.
Claims (6)
1. A system for rare disease research, comprising:
the user identity authentication and authority management module is used for managing a user account and access authority;
the auditing management module is used for forwarding a file to be audited, which is uploaded to the system after a user applies for researching related rare diseases, to a user with auditing authority for auditing;
the metadata management module is used for designing and generating metadata and a dictionary aiming at the related rare diseases;
the form template management module is in communication connection with the metadata management module and is used for manufacturing a research form by using the metadata and the dictionary;
the genotype collection module is used for collecting biological samples of the cases of the related rare diseases and processing the biological samples by adopting a polymerase chain reaction-restriction fragment length polymorphism analysis technology to detect the related genotypes, wherein the cases are new cases which accord with a preset unified diagnosis standard and have specified self characteristics;
a rare disease case data management module which is in communication connection with the form template management module and the genotype acquisition module and is used for inputting environmental exposure factors and miscellaneous variables which are daily contacted with the cases before or before the cases occur into the research form, collecting the related genotypes and grouping the cases according to the existence or the grade of the related genotypes and the environmental exposure factors, wherein the related genotypes and the environmental exposure factors occur independently in normal people; and
an analysis module communicatively coupled to the rare disease case data management module and configured to analyze interactions of the correlated genotypes with the environmental exposure factors in the occurrence of the correlated rare disease using a non-conditional Logistic regression analysis model based on the environmental exposure factors, the confounding variables, and the correlated genotypes.
2. The system for rare disease studies according to claim 1, wherein said documents to be reviewed include application documents, a list of project writing group members, a list of argumentation expert groups, and startup documents.
3. The system for rare disease studies according to claim 2, wherein said application documents include applicants' resume, application, disease referrals, diagnostic criteria, study protocol, study form, list and unit of study protocol and study form formulators, study protocol and study form demonstrations, and said startup documents include ethical lots and informed consent.
4. The system for rare disease research of claim 1, wherein the metadata comprises public metadata and private metadata and the dictionary comprises a public dictionary and a private dictionary.
5. The system for rare disease studies of claim 1, wherein the metadata management module is specifically configured for addition, editing, format definition, deletion, backup export, restore, search of the metadata; and addition, editing, deletion, backup export, restoration and search of the dictionary.
6. The system for rare disease studies of claim 1, wherein the form template management module is specifically configured to utilize the metadata and dictionary to design a plurality of study form templates for the related rare diseases and then combine the plurality of study form templates into the study form.
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