About

The iCaRe²’s objective is to enable:

• comprehensive studies of risk factors of cancer development and progression;
• novel strategies for prevention, screening, early detection and personalized treatment of cancer.

The iCaRe² has standardized and integrated multi-center cancer-specific registries and associated biospecimen banks, created and maintained by the Biomedical Informatics Core at the Fred & Pamela Buffett Cancer Center, into a resource that improves the efficiency of cancer-related research and facilitates collaborations among centers. Each registry utilizes a well-established model for collaborative research based on the confederation principle and governed by a steering committee according to the agreed-upon bylaws. As of August 2021, data and biospecimens on more than 32,000 subjects (cancer patients, high-risk individuals, and normal controls) have been collected in the iCaRe² registries. These registries are utilized at 65 institutions (107 distinct sites) from 23 U.S. states and one center in Italy.

The iCaRe² utilizes a novel metadata-driven software architecture approach that greatly simplifies support, maintenance, and future upgrades of the collaborative cancer registries and improves the interoperability with other related systems.

Researchers are not limited to collecting data from a small pool of subjects based on region or an institution. The iCaRe² broadens researcher samplings and allows scientists from all over the world to access data from a much larger collection base. Ultimately, this information will be improving patient care and the development of cancer treatments.

The following cancer-specific registries are currently enrolling subjects:

• Pancreatic Cancer Collaborative Registry (PCCR)
• Breast Cancer Collaborative Registry (BCCR)
• Thyroid Tumor and Cancer Collaborative Registry (TCCR)
• Genitourinary Cancer Registry (GU-CARE)
• Gastrointestinal & Abdominal Cancer Collaborative Registry (GAC-CARE)
• Head & Neck Cancer Registry (HN-CARE)
• Thoracic Oncology Collaborative Registry (TOCR)
• Gynecologic Cancer Registry (GYN-CARE)
• Leukemia and Myeloid Neoplasm Registry (LeMN)
• Central Nervous System Tumor Collaborative Registry (CTCR)
• Melanoma Collaborative Registry (MELCR)
• Non-Melanoma Skin Cancer Collaborative Registry (NMSC-CARE)
• Sarcoma Collaborative Registry (SARCR)
• Plasma Cell Dyscrasia Registry (PCDR)
• Neuroendocrine Tumor Registry (NETR)
• Auxiliary Cancer Registry – unknown primary (ACR)
• The normal controls registry – Great Plains Health Informatics Database (GPHID)

Some of these registries are operational for over a decade and have been re-engineered and migrated into the iCaRe² framework; some were built from scratch using our novel metadata-driven approach.

Contact us if you are interested in the development of a registry for other types of cancer or allied diseases.