To facilitate standardized collection, management, mining and sharing of comprehensive cancer-related data, the CRIO has developed and maintains the integrated Cancer Repository for Cancer Research (iCaRe2, icare2.unmc.edu). The iCaRe2 provides a HIPAA-compliant, secure, efficient, and user-friendly environment for the collection and management of multi-dimensional cancer-related data and biospecimens. The novel metadata-driven architecture utilized in the iCaRe2, allows for the creation and/or modification of complex cancer registries solely based on defined metadata without writing a single line of code.
The CRIO implements semantic interoperability by utilizing data standards and taxonomies to harmonize and transform data from external data sources to allow computable data availability for research analytics. This approach also ensures findability, accessibility, interoperability, and re-usability of collected data.
Besides the cancer registries, the major components of the iCaRe2 are: centralized Metadata Repository, Extract-Transform-Load (ETL) procedures and mapping pipelines for data integration, integrated Data Repository, iConsent web application for the electronic consenting, iRequest web application to streamline the submission, approval and management of data and specimen requests, Data Reporting and Mining Module, and Visualization Dashboard (Tableau).
To date, the following registries have been built and currently enroll subjects under the iCaRe2‘s umbrella:
- Pancreatic Cancer Collaborative Registry
- Breast Cancer Collaborative Registry
- Thyroid Tumor & Cancer Collaborative Registry
- Genitourinary Cancer Registry
- Thoracic Oncology Collaborative Registry
- Head and Neck Cancer Registry
- Gastrointestinal & Abdominal Cavity Cancer Registry
- Central Nervous System Cancer Registry
- Leukemia and Myeloid Neoplasm Registry
- Gynecologic Cancer Registry
- Sarcoma Registry
- Melanoma Registry
- Non-Melanoma Skin Cancer Registry
- Plasma Cell Dyscrasia Registry
- Neuroendocrine Cancer Registry
- Great Plains Health Informatics Database (Healthy Controls Registry)
The iCaRe2 registries enroll adult cancer patients (newly diagnosed and survivors), high-risk individuals and healthy controls.
The iCaRe2 utilizes confederation principle as an organizational model and open to any cancer center or hospital to participate. With our focus on the broad adoptability and collaboration, we succeeded in making the iCaRe2 equally attractive to a diverse range of institutions. The distinct characteristic of the iCaRe2 is its geographical coverage, with a significant percentage of small and rural hospitals and cancer centers.
To annotate biospecimen data collected in the iCaRe2 and to track biospecimens from collection to utilization across multiple projects, the Office maintains and supports the OpenSpecimen biobank/biospecimen management software (Krishagni LLC).
To obtain informed consents from the iCaRe2’s participants electronically to reduce paperwork and quality risks as well as to improve management of overall consent tracking, the Office has developed and successfully implemented the iConsent web application.