Integrated Cancer Repository for Cancer Research

Integrated Cancer Repository for Cancer Research

The iCaRe2 is a multi-institutional resource created and maintained by the Fred & Pamela Buffett Cancer Center to collect and manage standardized, multi-dimensional, longitudinal data and biospecimens on consented adult cancer patients, high-risk individuals, and normal controls. The distinct characteristic of the iCaRe2 is its geographical coverage, with a significant percentage of small and rural hospitals and cancer centers. The iCaRe2 advances comprehensive studies of risk factors of cancer development and progression and enables the design of novel strategies for prevention, screening, early detection and personalized treatment of cancer. Centers with expertise in cancer epidemiology, genetics, biology, early detection, and patient care can collaborate by using the iCaRe2 as a platform for cohort and population studies.

The integrated Cancer Repository for Cancer Research (iCaRe2 http://icare2.unmc.edu) is a unique sociotechnical resource for the collection and management of cancer and health-related data at the Fred & Pamela Buffett Cancer Center at University of Nebraska Medical Center (UNMC). The iCaRe2 is a multi-center, semantically interoperable and easily customizable cancer data resource, which is aimed at collecting, managing, mining and sharing the comprehensive, multi-dimensional cancer-related data on cancer patients and biospecimens (such as tumor specimens, germ line DNA, serum, urine, and plasma) collected from those individuals.

The iCaRe2 has been developed as an expansion of the biocomputing framework that initially included four multi-center collaborative registries: Pancreatic Cancer Collaborative Registry (PCCR), Breast Cancer Collaborative Registry (BCCR), Thyroid Cancer Collaborative Registry (TCCR), and Great Plains Health Informatics Database (GPHID; to enroll subjects with no history of cancer diagnosis at time of enrollment). The repository now includes: Thoracic Oncology Collaborative Registry (TOCR), GenitoUrinary Cancer Collaborative Registry (GUCARE), Head and Neck Cancer Collaborative Registry (HNCCR), Gastrointestinal & Abdominal Cavity Cancer Collaborative Registry (GACCaRe), Central Nervous System Tumor Collaborative Registry (CTCR), Leukemia and Myeloid Neoplasm Registry (LEMN) , Gynecological Cancer Collaborative Registry (GCCR), Sarcoma Collaborative Registry (SARCR), Melanoma Collaborative Registry (MELCR), Plasma Cell Dyscrasias Collaborative Registry (PDCR), Neuroendocrine Collaborative Registry (NETR), Non-Melanoma Skin Cancer Registry (NMSC) and Auxiliary Cancer Registry (ACR).

The iCaRe2 group elected to use a "confederation model", as opposed to a traditional registry or network model. The major advantages of a confederation model include the flexibility to use selected Centers for different research projects based on a Center's resources and expertise and the ability to have different strategies to address various research questions. A web-based registry iCaRe2 was developed and made available to any Center to participate in data collection and storage of cancer related data. The iCaRe2 provides a HIPAA compliant, secure, efficient and user-friendly mechanism for data and validation; utilization of standard vocabulary and data elements; and ad-hoc data reporting capabilities. The iCaRe2 serves as a collaboration platform for studies (including clinical trials) performed in centers with expertise in cancer biology, pathology, epidemiology, genetics, early detection, and patient care.

Inclusion Criteria

• Diagnosis/history of cancer
• Risk for developing cancer or suspicious clinical findings
• No history of cancer (normal control registry)
• Able to provide informed consent
• 19 years of age or older
• English or Spanish speaking individuals

Exclusion Criteria

• Unable to provide informed consent because of cognitive impairment
• Non-English or non-Spanish speaking individuals