Supporting Multiple Registries with a Single System
The Problem
Registries are created for a wide range of purposes that include such goals as recruiting patients for clinical trials, tracking treatment plans for tumor boards, determining study feasibility, conducting retrospective chart reviews, and evaluating outcomes.
Typically, these registries are maintained in various locations and formats throughout an institution. Individual investigators utilize their favorite database tool or spreadsheet and maintain autonomous control over their specific registry of interest.
In the current environment, there are several opportunities for improvement. Within a typical institution, the various registries:
- Require manual entry of data, many of which are duplicative of those in other systems
- Are largely inaccessible to all but the controlling parties
- Are seldom leveraged for more than their original purpose
- Often fail to meet HIPAA requirements for protecting patient data
The Solution
The OnCore system for registries management offers research organizations a scalable and flexible solution to satisfy the needs of multiple registry projects without losing any of the speed, agility, or control offered by traditional, single-use databases.
Get Up and Running Fast
Creating the first registry is as easy as defining a spreadsheet. Researchers can start collecting data within minutes.
Focus on the Subject of Interest
The underlying data structure is controlled and "understood" by OnCore while the researchers' view of the registry is determined by their subject of interest. Researchers can orient their registry toward an event (e.g. biopsy), condition (e.g. pregnancy), diagnosis (e.g. diabetes), patient demographic (e.g. over 65), or other concept. Additionally, relationships between records including familial, temporal, or taxonomic, may also be maintained.
Leverage Existing Data Sources
Integrating OnCore with key hospital and laboratory systems and other research information systems allows a variety of data from different sources to be used to automatically populate registries.
Build a Quality Resource with Standard Data Elements
The integrity and quality of data collected is ensured through the use of standards. Collection forms are created using standard data elements maintained in an institution-wide library. Libraries can be built on existing data element repositories such as the NCI's caDSR and can reflect existing controlled vocabularies such as SNOMED and LOINC. Libraries can also be extended to include institutional preferences.
Promote Collaboration and Data Sharing
A flexible and secure data sharing model provides registry owners control over their own data while the exponential value of aggregated data encourages collaboration and data sharing. The system is capable of allowing the owner to selectively share all or part of the data with other registries in the system at any point in the life of the registry.
The ability to create a de-identified version of a registry, one where the Protected Health Information (PHI) has been removed, also promotes data sharing by reducing restriction to data access based on privacy concerns. Leverage Clinical Research, Biospecimen, and Registry Data The OnCore applications for clinical research management and for biospecimen management are pre-integrated with the Unified Registries Management application. One platform means that data need only be entered once, and each registry benefits from ongoing data collection throughout the institution.
