Integrated Cancer Repository for Cancer Research

  • End date
    Dec 26, 2099
  • participants needed
  • sponsor
    University of Nebraska
Updated on 26 January 2021
early diagnosis
early detection
primary cancer


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 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 provides: (i) a HIPAA compliant, secure, efficient and user-friendly mechanism for data and validation; (ii) utilization of standard vocabulary and data elements; and (iii) the 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.

The iCaRe2 has been developed as an expansion of the biocomputing framework that initially included four multi-center collaborative registries:

(i) the PCCR (Pancreatic Cancer Collaborative Registry that was established in 2001), (ii) the BCCR (Breast Cancer Collaborative Registry - established in 2006 ); (iii) the TCCR (Thyroid Cancer Collaborative Registry - established in 2006), and (iv) the GPHID (Great Plains Health Informatics Database - established in 2011 to enroll subjects who have no personal history of cancer diagnosis at the time of enrollment).

At present, this framework has been incrementally expanded to include the 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), and Auxiliary Cancer Registry (ACR).

The iCaRe2 group elected to use a "confederation model", as opposed to a traditional registry or network model. It was felt that these latter models implied that the registry or network would assume control of an individual Center's database. 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. It was also recognized that for this model to be successful, it is essential to have a standardized approach to data collection (patient information and biospecimen annotation) and reporting. A confederation would also encourage participation of any interested Center, irrespective of its size or location. A web-based registry iCaRe2 was developed and made available to any Center to participate in data collection and storage of cancer related data.

Condition Malignant neoplasm of prostate, Monoclonal gammopathy, Pancreatic Cancer, Urethral Cancer, Neuroendocrine Tumor, Pulmonary Disease, Bile duct carcinoma, APC gene, Paranasal Sinus Cancer, urinary tract neoplasm, Ovarian disorder, Neuroectodermal Tumor, Colorectal Cancer, Connective and Soft Tissue Neoplasm, Endometrial Carcinoma, Cholangiocarcinoma, Multiple Myeloma, Malignant neoplasm of kidney, Rectal Cancer, Malignant neoplasm of lip, Lynch Syndrome, Abdominal Neoplasm, Oral Neoplasm, Nephropathy, Thyroid Adenoma, Uterine Cancer, Metastasis, Prostatic disorder, Pancreatic disorder, Malignant neoplasm of ureter, leukemia, bladder cancer, bladder disorder, Central Nervous System Neoplasms, Breast Cancer, Adenomatous Polyposis Coli, Biliary neoplasm, Oropharyngeal Cancer, Ovarian Cancer, Esophageal Diseases, Esophageal Cancer, Laryngeal Cancer, Malignant neoplasm of colon, melanoma, Neoplasms, Unknown Primary, Hereditary Neoplastic Syndrome, Lung Neoplasm, skin cancer, HEPATIC NEOPLASM, Nasopharyngeal Cancer, Lymphoproliferative Disorder, Neoplasm of unspecified nature of digestive system, Vaginal Cancer, Mesothelioma, Sarcoma, Hypopharyngeal Cancer, Gastropathy, Gastric Cancer, Bronchial Neoplasm, Mesothelioma, gastrointestinal stromal tumor, Anal Cancer, head and neck cancer, salivary gland cancer, Malignant neoplasm of testis, Malignant neoplasm of penis, Duodenal Cancer, Thymoma, Thyroid disorder, Malignant neoplasm of gallbladder, Gallbladder Disease, Stomach Discomfort, Pancreatic Disorders, Metastatic Melanoma, Prostate Disorders, All Solid Tumors, Liver Metastases, Bone Metastases, Kidney Disease (Pediatric), Colon Cancer Screening, Prostate Cancer, Early, Recurrent, Solid Tumors, Colon cancer; rectal cancer, Ovarian Function, Esophageal Carcinoma, Healthy Control, Malignant Mesothelioma, Peritoneal Carcinomatosis, Breast Cancer Diagnosis, Brain Metastases, Gallbladder Carcinoma, Small Intestine Cancer, Peritoneal Surface Malignancies, Nasal Cavity Cancer, Breastcancer, Urothelial Cancer, Laryngeal Carcinoma, Gastric Carcinoma, Recurrent Ovarian Cancer, Abdominal Cancer, CNS Malignancy, Leukemia (Pediatric), Urothelial Tract Cancer, Sarcoma (Pediatric), Islet Ce417ll Cancer, Neurectoderma, Kidney Cancer, Lung Cancer, Colon Cancer, Endometrial Cancer, Prostate Cancer, Testicular Cancer, Esophageal Disorders, Gall Bladder Disorders, Thyroid Disease, Malignant Melanoma, Liver Cancer, Kidney Disease, Gall Bladder Cancer, Lung Disease, Oral Cavity Cancer, Stomach Cancer, Metastatic Cancer, Bladder Disorders, Thyroid Disorders, Biliary Tract Cancer, Thyroid Cancer, Hereditary Cancer Syndromes, Renal Cancer, Digestive System Neoplasms, Oral Cancer, Soft Tissue Sarcoma, Neoplasm Metastasis, Lymphoproliferative disorders, Bladder Carcinoma, Urologic Cancer, breast carcinoma, gallbladder cancer, nasopharyngeal carcinoma, oropharyngeal carcinoma, prostate carcinoma, cns tumors, cns tumor, cns neoplasm, central nervous system tumors, central nervous system tumor, plasma cell dyscrasia, anal carcinoma, cancer of the bile duct, mouth cancer, carcinoma of oral cavity, ovarian carcinomas, cancer, ovarian, cancer ovarian, cancer of the ovary, familial adenomatous polyposis, familial adenomatous polyposis coli, colon carcinoma, leukemias, gastric cancers, carcinoma of the bladder, gastrointestinal stromal tumors, gist, sarcomas, soft tissue sarcomas, cancer, breast, esophagus cancer, oesophageal cancer, malignant central nervous system tumor, central nervous system cancer, cancer, liver, cancer, hepatic, cancer, hepatocellular, liver cancers, hnpcc, oral cancers, tumor, unknown primary, skin cancers, multiple myeloma (mm), cancer of the pancreas, thymus cancer, cancer, thymic, carcinoma of hypopharynx, ovarian tumors, thyroid carcinoma, cancer, renal, prostate cancers, small intestinal cancer, pancreatic cancers, cancer, pancreatic, cancer, hypopharyngeal, cancer of the esophagus, oesophageal carcinoma, vaginal carcinoma, bladder tumor, carcinoma lung, lung carcinoma, carcinoma of oropharynx, cancer, oropharynx, testis cancer, rectal carcinoma, neuroendocrine tumors, neuroendocrine tumour
Clinical Study IdentifierNCT02012699
SponsorUniversity of Nebraska
Last Modified on26 January 2021


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