CCSdb is a web-based registry database for recording and reporting clinical experience and outcomes of surgery for congenital cardiac disease.
CCSdb has built-in reports that can be generated easily and quickly at any time.
CCSdb evolved from a registry database created in 1982 for the congenital heart surgeons at the Hospital for Sick Children in Toronto where it has been in continuous development and use since. Currently it is also used in 5 of the 8 Canadian congenital heart units and in several units in the United States and other countries. An anonymised annual report of the aggregate experience is sent to each of the Canadian users to compare to their institutional results which they can readily generate.
CCSdb is an Internet version to permit World-wide participation. Data is encrypted in a confidential & secure Internet-based server for congenital heart surgeons to record their clinical experience.
The purpose of CCSdb is to provide real-time data analysis using built-in output reports that will answer these 2 questions:
Each CCSdb Centre will have confidential, secure access to their data alone. In addition, they will receive an annual report of the aggregate experience of all CCSdb Centres to compare to their individual experience.
CCSdb data registry will record the essential information of every patient who undergoes congenital heart surgery.
Data for each patient is linked to each cardiac operation that patient undergoes, including the basic information about each operation and the in-hospital and follow-up outcome.
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Built-in report generators produce 9 pre-formatted reports as follows:
A table is generated on screen for records that contain discrepancies, errors or omissions. Clicking on each row opens the individual records to facilitate correction of the records by the data manager.
The Summary report can be generated for any specified date range, a surgeon or an institution. It generates either a single column “aggregate” report of the entire selected interval or a breakdown by calendar year for each year of the selected interval.
The Summary report includes an overview of the clinical experience and in-hospital outcomes, including prevalence, mean length of stay, number of re-operations and mortality rates. In addition there is a breakdown by age category as follows:
The cumulative sums graph illustrates the cumulative mortality over any specified time interval for any specified Index primary operative procedure. The vertical axis is the cumulative mortality and the horizon axis is the consecutive number of operations from the specified start date.
The RACHS (Risk-Adjusted Congenital Heart Surgery) graph illustrates in a coloured bar graph the mortality for each of 5 different risk groups of Index primary operations, and the overall mean mortality for all 5 groups selected by RACHS criteria (ref. Jenkins et al JTCVS 2001;124; 97-104).
An inset pie graph illustrates the number and % of each RACHS category. In addition the operations not categorized by RACHS criteria are noted in the subheading indicating their number and mortality rate.
The RACHS (Risk-Adjusted Congenital Heart Surgery) trend depicts annual rates of either mortality or prevalence for each of 5 risk categories.
Eight common (or ‘benchmark’) operations of congenital heart surgery are tabulated with their prevalence and mortality. The date intervals and surgeon or institution must be specified. The table also sums the totals and averages the aggregate mortality.
The prevalence columnar report can be generated for either primary diagnosis or primary index operation by specifying a date interval, surgeon or institution. For each diagnosis or operation, the total number, mortality, mortality rate and prevalence rate are listed in a columnar table.
The stage I palliation report is a directed graph represeting the flow of patients through possible paths of stage I palliation.
The comparative report compares your centre's performance to other (participating) centres.
Data confidentiality and security are absolutely essential. CCSdb is committed to ensure the safest possible methods are used to protect all database information.
Each CCSdb participating centre will maintain their own physically separate database to ensure that no leaks can occur across Centres.
No CCSdb participant will have access to any other centre’s data.
Patient names will be encrypted before being stored in the database using industry-standard AES symmetric key encryption.
Access to decrypted data will be restricted to Users authorized by the Centre’s Data Manager or the CCSdb Manager.
Institutional Data Manager. These individuals will only have access to their institutional records. For their records, they will have read/write/delete privileges. They will also be able to add to their institutional lists of surgeons, cardiologists and referral centers. The data available to them will only be for that institution, no other institutions data will be accessible.
These individuals, (surgeons, physicians, administrators, nurses, etc) could apply and be assigned ‘read only’ access to CCSdb. These individuals will not be allowed to add data, change data or delete data.
The data available to them will only be for that institution, no other institution’s data will be available. Their privileges would allow access to individual patient records and further could be sub-categorized to allow (or not) the ability to do reports and further sub-categorized to allow search/output of selected groups of patients.
CCSdb Manager. The web manager for CCSdb will be able accesses all of the data in CCSdb. This individual will be able to upgrade the software. They will also have access to all data to ensure data integrity, consistency and omissions and to construct a multi-centre aggregate report for CCSdb-users who wish to participate in the multi-centre report.
Access to the central CCSdb server will be restricted to the CCSdb data manager. The Web data manager will require authentication and authorization (vide infra, Authentication & Authorization).
The central server will be a Personal Health Information Protection Act, 2004 (PHIPA)-compliant, high-security, commercial provider with 24/7 service and rapid response to service issues.
The application will employ strong SSL (2048-bit) encryption to encrypt all data in transport between the database and end user in order to prevent data snooping and "man-in-the-middle" attacks.
All actions performed by the user will be logged by the application to allow for full auditing of changes to the database.
CCSdb users are authenticated by the application. Passwords are hashed and salted using the industry-standard SHA-2 algorithm before being stored in the database in order to prevent password retrieval in case of a database compromise.
Each CCSdb user is assigned roles governing which data and operations the each of their approved users has access to.
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