Rare disease follow-up visit system

Through the cohort configuration and management module of the rare disease follow-up system, the problem that the existing system cannot adapt to the rare disease diagnosis and treatment model is solved, and efficient follow-up management of patients with rare disease is achieved.

CN120544952APending Publication Date: 2025-08-26PEKING UNION MEDICAL COLLEGE HOSPITAL +1
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Patent Information

Application Number
CN202510707130.7
Authority / Receiving Office
CN · China
Patent Type
Applications(China)
Current Assignee / Owner
Filing Date
2025-05-29
Publication Date
2025-08-26

AI Technical Summary

Technical Problem

The existing medical follow-up system cannot be applied to complex diagnosis and treatment models for rare diseases, and its management is unclear and cannot be customized.

Method used

It provides a rare disease follow-up system, including cohort configuration module, system management module, center management module, CRF template library and patient teaching content management module, etc., to create and manage cohorts of multiple patients with the same medical characteristics, associate multiple medical centers and patient teaching content, and support customized follow-up management.

Benefits of technology

It improves the follow-up quality of patients with rare diseases, adapts to complex diagnosis and treatment models, and achieves efficient management of patients.

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Abstract

The invention provides a rare disease follow-up visit system, and the system comprises a queue configuration module which is used for obtaining queue brief introduction information, follow-up visit CRF, queue disease teaching information and queue state information edited by a user in a queue creation interface, creating a target queue, and managing the created queue, each target queue comprises a plurality of patients with the same medical features, a plurality of associated medical centers and patient teaching content, each medical center comprises a doctor of at least one department, and the patient teaching content comprises education information of diseases of the patients. The follow-up visit management of the patient in a complex diagnosis and treatment mode is facilitated, and the follow-up visit quality of the rare patient is improved.
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Description

Technical Field

[0001] The present application relates to the field of medical technology, and in particular to a rare disease follow-up system. Background Art

[0002] Due to the complex symptoms, multidisciplinary nature, and high diagnostic difficulty of rare diseases, the diagnosis and treatment of rare diseases often involves a complex range of hospitals, departments, and physicians. Existing medical follow-up systems often fail to adopt a single standard for patient follow-up management, are not customizable, and are difficult to adapt to the complex diagnosis and treatment models of rare diseases. Summary of the Invention

[0003] The purpose of the embodiments of the present application is to provide a rare disease follow-up system to solve the technical problems that the existing medical follow-up system is not applicable to the complex diagnosis and treatment models of rare diseases and has unclear management.

[0004] In a first aspect, the present invention provides a rare disease follow-up system, comprising a queue configuration module for obtaining queue profile information, follow-up CRF, queue patient education information, and queue status information edited by a user in a queue creation interface, creating a target queue, and managing the created queue. Among them, each target cohort includes multiple patients with the same medical characteristics and multiple associated medical centers and patient education content. Each medical center includes a doctor from at least one department, and the patient education content includes educational information specific to the patient's disease.

[0005] In an optional embodiment, a system management module is further included for performing user management, role management, menu management, operation log management and login log management on the rare disease follow-up system, wherein the roles include at least patients and doctors.

[0006] In an optional embodiment, a center management module is further included for managing the medical center, including adding, modifying, deleting, importing, exporting and querying the medical center.

[0007] In an optional embodiment, a CRF template library and a template management module are further included. The CRF template library includes a plurality of pre-configured pathology report form templates. The template management module is used to classify, create, edit and delete CRFs.

[0008] In an optional embodiment, it also includes a patient education library and a patient education content management module. The patient education library includes a plurality of pre-uploaded educational information for patients with rare diseases, and the patient education content management module is used to classify, create, edit and delete the educational information.

[0009] In an optional embodiment, it further includes an information management module for creating, modifying and deleting medical information provided to the user terminal display interface.

[0010] In an optional embodiment, the queue configuration module includes a queue profile configuration unit, which is used to obtain queue profile information edited by the user in the first sub-interface of queue creation, where the queue profile information includes basic queue information and user-side display information.

[0011] In an optional embodiment, the queue configuration module includes a follow-up CRF configuration unit, which is used to generate a new follow-up CRF and store it in the CRF template library based on the follow-up period obtained from the first sub-interface of queue creation and the configuration information of the follow-up CDF obtained in the second sub-interface of queue creation.

[0012] In an optional embodiment, the queue configuration module includes a queue patient education information configuration unit, which is used to respond to the selection operation for the target patient education content in the third sub-interface of queue creation and associate the target patient education content with the current queue.

[0013] In an optional embodiment, the queue configuration module includes a queue status configuration unit, which is used to respond to the editing operation of the status control corresponding to the target queue in the fourth sub-interface of queue creation, and determine the queue status of the target queue, wherein the queue status includes a pending release status, an ongoing status, and a closed status.

[0014] The present application provides a rare disease follow-up system, including a cohort configuration module for acquiring user-edited cohort profile information, follow-up CRFs, cohort patient education information, and cohort status information in the cohort creation interface, creating target cohorts, and managing the created cohorts. Each target cohort includes multiple patients with the same medical characteristics, multiple associated medical centers, and patient education content. Each medical center includes a physician from at least one department, and the patient education content includes educational information specific to the patient's disease. This facilitates follow-up management of patients under complex diagnosis and treatment models and improves the quality of follow-up for patients with rare diseases. BRIEF DESCRIPTION OF THE DRAWINGS

[0015] In order to more clearly illustrate the technical solutions of the embodiments of the present application, the following is a brief introduction to the drawings required for use in the embodiments of the present application. It should be understood that the following drawings only show certain embodiments of the present application and therefore should not be regarded as limiting the scope. For ordinary technicians in this field, other relevant drawings can be obtained based on these drawings without creative work.

[0016] Figure 1 A schematic structural diagram of a rare disease follow-up system provided in an embodiment of the present application. DETAILED DESCRIPTION

[0017] The technical solutions in the embodiments of the present application will be described below in conjunction with the drawings in the embodiments of the present application.

[0018] Figure 1 This is a schematic diagram of the structure of a rare disease follow-up system provided in an embodiment of the present application. Figure 1 As shown, the system includes a queue configuration module, which is used to obtain the queue profile information, follow-up CRF, queue patient education information and queue status information edited by the user in the queue creation interface, create a target queue, and manage the created queue. Among them, each target cohort includes multiple patients with the same medical characteristics and multiple associated medical centers and patient education content. Each medical center includes a doctor from at least one department, and the patient education content includes educational information specific to the patient's disease.

[0019] The cohort configuration module is primarily used to create a cohort profile within the rare disease follow-up system. This profile includes the cohort name, disease name, whether a patient informed consent form is required, cohort description, cohort diagram, cohort leader, treatment plan, and inclusion criteria.

[0020] The queue configuration module can also be used to set the follow-up period. Set the interval and number of follow-up visits since the last visit, and support deleting and adding a new period.

[0021] The Queue Configuration module also allows you to set up a queue CRF, including module and item configuration, support for early warning and scale module configuration, quick application of the template library, and preview of configured CRFs. You can also set up queue patient education and add or remove patient education programs. Import participating centers and add or remove centers. Assign follow-up physicians and add or remove physician accounts, assign app permissions, and assign data permissions. You can also set queue status, among other features.

[0022] Specifically, the queue configuration module includes a queue profile configuration unit, which is used to obtain queue profile information edited by the user in the first sub-interface of queue creation, wherein the queue profile information includes basic queue information and user-side display information.

[0023] The backend queue management can support query, creation of queues, viewing of queue lists, deletion of queues, modification of names, follow-up settings, and viewing of patient lists under queues.

[0024] Querying queues supports quick search of queues by queue name, queue ID, and queue status (pending, in progress, closed). The search conditions can be reset or cleared.

[0025] To create a queue, click the Create Queue control to enter the first sub-interface of queue creation.

[0026] The queue configuration module also includes a follow-up CRF configuration unit for generating a new follow-up CRF and storing it in the CRF template library based on the follow-up period obtained from the first sub-interface of queue creation and the configuration information of the follow-up CDF obtained in the second sub-interface of queue creation.

[0027] The second sub-screen of the cohort creation process displays the follow-up cycles for the cohort type in the previous step. Each group of cycles displays a CRF card. Elements on the card include the corresponding cycle name (for a group, the "Starting Cycle Name" and "Ending Cycle Name" CRFs are displayed) and a Create New CRF control. To create a new CRF, click the Create New CRF control. The default configuration page displays buttons for Add New Module, Add Self-Assessment Scale, and Add Alert. To add a new module, click "Add New Module" to enter the module configuration page and add the module based on the CRF content.

[0028] The CRF configuration unit can be used to modify module names and delete modules. When deleting a module, a pop-up window will prompt, "Once deleted, it cannot be retrieved. Are you sure you want to delete the module?" Click OK to complete the deletion; click Cancel to not delete the module. To add a module entry, click the Add Entry control to enter the entry configuration page.

[0029] Add New Module - Click the blue button to add a new general module below the module. The module is unnamed, but you can enter a name. Add Self-Assessment Scale - Click the yellow button to add a new scale module below the module. The module is unnamed, but you can enter a name. Add Warning Module - Click the red button to add a new warning module below the module. The module is unnamed, but you can enter a name. Different module types have different configuration items.

[0030] New CRFs can support the App Preview feature, allowing you to view the CRF's effect on the app (determine the appearance and size of the preview phone). A pop-up window will be displayed to view the contents of the module items, which cannot be edited. You can drag the modules to change the order of display in the app, save the changes, and return to the previous page.

[0031] Select a folder under the CRF template library, save it, return to the previous page, and click Confirm Folder.

[0032] To add a general module (blue) entry, click "Add Entry Control" to enter the configuration page.

[0033] Standard entry item configuration takes all items configured in the standard entry item management module and displays them in a three-level structure in the order of settings. The third-level items and second-level categories can be dragged and dropped into the middle configuration page. When dragging a second-level category, all third-level items under the second-level category can be dragged to the configuration page in batches. The configuration page has one question per line, and the application effects on the App and PC are fixed display effects.

[0034] Standard photo item configuration, take all items configured in the standard photo item management module, and display them in a two-level structure in the order of settings. When dragging a first-level category, you can batch drag all items below to the configuration page. All items are image upload items, supporting App photography or PC upload.

[0035] The photo item supports viewing and selecting items entered in EDC, including whether EDC displays the item and whether the item is required. All items are maintained by the standard photo item management.

[0036] Add an entry to the scale module (yellow). Click Add Entry to enter the configuration page. The standard scale uses all items configured in the standard scale management module and displays them in the order they are set. Drag the title to batch-drag all form items under the questionnaire to the configuration page. The scale class supports setting entry rules and scoring rules.

[0037] Add an entry for the Alert module (red). Click Add Entry to enter the configuration page. The Alert module settings entry displays all controls and supports configuration of controls, including undefined names, entry rules, and alert rules. Alert rules support system default rules and flexible rules written in a logical language.

[0038] After completing the CRF configuration for this cycle, you can view the number of entries under each module. The cycle template supports the [App Preview] mode. The preview mode cannot be submitted in real time. You can long press and drag the module to change the actual display order.

[0039] The queue configuration module also includes a queue patient education information configuration unit, which is used to respond to the selection operation for the target patient education content in the third sub-interface of queue creation and associate the target patient education content with the current queue.

[0040] The third sub-interface of queue creation displays all the patient education library contents of the user's institution on the left. It is a category list, and the displayed information includes: category name, the number of patient education contents under this category that have been added to the current queue on the right. All selected patient education contents are displayed on the right. Click on any category to enter the content list under the category. Click on the breadcrumb navigation on the page to return to the file category list. It supports searching by content name and counting the number of contents selected into the current queue under this category. The content list displays the content name, update time in the template library, and the type of content. Long press the mouse to drag the content to the right, and click to view the content details. Click Save to enter the queue patient education list page. Click Save and go to the next step to enter the queue status setting page.

[0041] The patient education list page displays all the content that has been added to the current queue and supports searching by title content; click Add patient education content to enter the configuration state; click Next to enter the queue status setting page.

[0042] The queue configuration module also includes a queue status configuration unit for responding to an edit operation of a status control corresponding to a target queue in the fourth sub-interface of queue creation to determine the queue status of the target queue, wherein the queue status includes a pending status, an ongoing status, and a closed status.

[0043] Among them, the queue status - pending release indicates that the queue can perform the following operations: modify name, set follow-up, and delete; Queue Status - In Progress indicates that the following operations can be performed on this queue: Follow-up settings (can only modify patient education content, center, doctor, and queue status) Queue Status - Closed indicates that only the queue form content can be viewed for this queue; The queue defaults to the pending release state. The pending release state rules are not executed. All queue settings can be modified. Click to release the queue reminder and associate other queues. You can select the created queue and directly add the patient files of this queue to this queue.

[0044] The rare disease follow-up system also includes a system management module for performing user management, role management, menu management, operation log management and login log management on the rare disease follow-up system, wherein the roles include at least patients and doctors.

[0045] User management mainly includes adding new users, modifying, deleting, importing, exporting, and querying.

[0046] To add a new user, click Add, fill in the user information, such as user name, mobile phone number, assigned role, uploaded avatar, etc., and click Save to complete the user information operation. To modify, you can modify the user information, such as user name, mobile phone number, assigned role, uploaded avatar, etc. To delete, click Delete. If this user is involved in the queue and a patient has been created, it will prompt that it cannot be deleted. Import can support downloading import templates. After filling in the templates, you can import them in batches. To export, check the user list and click Export to export user data. Query can be quickly queried by user name, mobile phone number, and creation time, or reset and query again.

[0047] Role management mainly includes adding roles, modifying, deleting, exporting, and querying. To add a role, click Add, enter the role name, select a center, assign permissions, and click Save to complete the role addition operation. To modify, you can change the role name, modify the center, and modify the assigned permissions. To delete, click Delete. If this role has been applied to a user, it will prompt that it cannot be deleted. Only when there are no users under this role can it be deleted. To export, select the role and click Export to export the role data. Query can be quickly searched by role name and creation time, or reset and search again.

[0048] Menu management primarily includes adding new menus, modifying, expanding / collapsed, and searching. To add a new menu, click Add, enter the menu name, request address, select the type, and click Save to complete the process. To modify, you can modify the menu name, request address, and select the type. Expand / collapse allows you to expand or collapse all first- and second-level menus. To search, you can quickly search by menu name or menu status, or reset and search again.

[0049] Operation logs mainly include export and query. You can quickly query by system module, operation type, operator, status, and time, and you can also reset and re-query. To export, select the log list and click Export to export all operation log data.

[0050] Login logs mainly include export and query. You can quickly query by login address, login name, login status, and time, and you can also reset and search again. To export, select the log list and click Export to export all operation log data.

[0051] The rare disease follow-up system also includes a center management module for managing medical centers, including adding, modifying, deleting, importing, exporting and querying medical centers.

[0052] Center management mainly includes adding, modifying, deleting, importing, exporting, and querying. To add a new one, click Add, fill in the center information, center name, select region and other information, and click Save to complete the operation. To modify, you can modify the center information, use center name, select region and other information. To delete, click Delete. If this center has been applied to the queue, it will prompt that it cannot be deleted. Import can support downloading import templates. After filling in the templates, you can import them in batches. To export, check the center list and click Export to export the center data. Query can be quickly searched by center name, center number, region, or reset and search again.

[0053] The rare disease follow-up system also includes a CRF template library and a template management module. The CRF template library includes multiple pre-configured pathology report form templates, and the template management module is used to classify, create, edit and delete CRFs.

[0054] CRF template library templates can be created, edited, and deleted according to the first and second level classifications. The CRF template library supports a two-level structure. The first level is the classification, which allows you to create, edit, and delete categories. There is no limit on the number of characters in the category name, and there is no limit on the number of categories. The list is arranged in reverse order by creation time, and the number of templates under the category is displayed after the title. Click the delete prompt, and after confirming the deletion, the category and the templates under the category will be deleted at the same time. Click a category to enter the form list under the category. Each form displays the form name, the number of modules under the form, and the number of items under the form. It supports the creation of new forms, with no limit on the number of forms. Creating a new form enters the configuration page, supports filling in the form title, adding new modules, and new items under the module. The modules include general new modules, self-assessment scales, and early warnings, which are consistent with the follow-up CRF configuration.

[0055] Templates are viewed in list format. Templates can be created, edited, deleted, and configured with template modules and entries. Templates can also be previewed and applied.

[0056] The rare disease follow-up system also includes a patient education library and a patient education content management module. The patient education library includes a plurality of pre-uploaded educational information for rare disease patients, and the patient education content management module is used to classify, create, edit and delete the educational information.

[0057] Patient education database, patient education content is created, edited, and deleted according to primary and secondary categories. Patient education information can be created, edited, and deleted.

[0058] The patient education list supports patient education content classification, category creation, article addition, and patient education content management. The patient education library supports a two-tier structure. The first tier is folder classification, which supports creating, naming, and deleting new folders. Deleting a folder also deletes the contents within the folder. Folder statistics are supported, indicating the number of items within the folder. Clicking a folder will display the content list within the folder. New articles can be created, and these articles can be referenced by the patient education queue settings configured in the CRF.

[0059] Patient education content settings can edit articles, including editing titles, uploading article pictures, describing summaries, and information content.

[0060] The rare disease follow-up system also includes an information management module for creating, modifying and deleting medical information provided to the user-side display interface.

[0061] Information management mainly includes APP carousel management, information statistics, information comments, knowledge base-disease knowledge management, and academic achievement management.

[0062] Specifically, the doctor's homepage information is created, modified, and deleted, the patient's carousel is created, modified, and deleted, and the doctor's carousel is created, modified, and deleted.

[0063] You can view the list of doctor-side information on the list page, support searching for articles by title, click Add, and it will be published to the homepage of all users. You can also view the carousel list of doctor-side information on the list page, support searching by title, and click Add to select the carousel content.

[0064] In the embodiments provided in this application, it should be understood that the disclosed devices and methods can be implemented in other ways. The device embodiments described above are merely schematic. For example, the division of the units is only a logical function division. There may be other division methods in actual implementation. For example, multiple units or components can be combined or integrated into another system, or some features can be ignored or not executed. Another point is that the mutual coupling or direct coupling or communication connection shown or discussed can be through some communication interface, indirect coupling or communication connection of devices or units, which can be electrical, mechanical or other forms.

[0065] In addition, the units described as separate components may or may not be physically separate, and the components shown as units may or may not be physical units, that is, they may be located in one place or distributed across multiple network units. Some or all of the units may be selected according to actual needs to achieve the purpose of the solution of this embodiment.

[0066] Furthermore, the functional modules in each embodiment of the present application can be integrated together to form an independent part, or each module can exist independently, or two or more modules can be integrated to form an independent part.

[0067] It should be noted that if the function is implemented in the form of a software function module and sold or used as an independent product, it can be stored in a computer-readable storage medium. Based on this understanding, the technical solution of the present application, or the part that contributes to the existing technology, or the part of the technical solution, can be embodied in the form of a software product. The computer software product is stored in a storage medium and includes a number of instructions for enabling a computer device (which can be a personal computer, server, or network device, etc.) to execute all or part of the steps of the method described in each embodiment of the present application. The aforementioned storage medium includes: U disk, mobile hard disk, read-only memory (ROM), random access memory (RAM), disk or optical disk, and other media that can store program code.

[0068] In this document, relational terms such as first and second, etc. are used merely to distinguish one entity or operation from another entity or operation, but do not necessarily require or imply any actual relationship or order between these entities or operations.

[0069] The above description is merely an embodiment of the present application and is not intended to limit the scope of protection of the present application. For those skilled in the art, various modifications and variations of the present application are possible. Any modifications, equivalent substitutions, improvements, etc. made within the spirit and principles of the present application shall be included in the scope of protection of the present application.

Claims

1. A rare disease follow-up system, characterized in that: The system comprises: The queue configuration module is used to obtain the queue profile information, follow-up CRF, queue patient education information and queue status information edited by the user in the queue creation interface, create the target queue, and manage the created queue. Among them, each target cohort includes multiple patients with the same medical characteristics and multiple associated medical centers and patient education content. Each medical center includes a doctor from at least one department, and the patient education content includes educational information specific to the patient's disease.

2. The system according to claim 1, wherein: It also includes a system management module for performing user management, role management, menu management, operation log management and login log management for the rare disease follow-up system, where the roles include at least patients and doctors.

3. The system according to claim 1, wherein: It also includes a center management module for managing medical centers, including adding, modifying, deleting, importing, exporting and querying medical centers.

4. The system according to claim 1, wherein: It also includes a CRF template library and a template management module. The CRF template library includes multiple pre-configured pathology report form templates. The template management module is used to classify, create, edit and delete CRFs.

5. The system according to claim 1, wherein: It also includes a patient education library and a patient education content management module. The patient education library includes a plurality of pre-uploaded educational information for patients with rare diseases. The patient education content management module is used to classify, create, edit and delete the educational information.

6. The system according to claim 1, wherein: It also includes an information management module for creating, modifying and deleting medical information provided to the user's display interface.

7. The system according to claim 1, wherein: The queue configuration module includes a queue profile configuration unit, which is used to obtain queue profile information edited by the user in the first sub-interface of queue creation, wherein the queue profile information includes basic queue information and user-side display information.

8. The system according to claim 4, wherein: The queue configuration module includes a follow-up CRF configuration unit, which is used to generate a new follow-up CRF and store it in the CRF template library based on the follow-up period obtained from the first sub-interface of queue creation and the configuration information of the follow-up CDF obtained in the second sub-interface of queue creation.

9. The system according to claim 1, wherein: The queue configuration module includes a queue patient education information configuration unit, which is used to respond to a selection operation for target patient education content in the third sub-interface of queue creation and associate the target patient education content with the current queue.

10. The system according to claim 1, wherein: The queue configuration module includes a queue status configuration unit, which is used to respond to the editing operation of the status control corresponding to the target queue in the fourth sub-interface of queue creation, and determine the queue status of the target queue, wherein the queue status includes a pending status, an ongoing status, and a closed status.