Integrated Cancer Repository for Cancer Research

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Brief Title

Integrated Cancer Repository for Cancer Research

Official Title

Integrated Cancer Repository for Cancer Research

Brief Summary

      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.

Detailed Description

      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

      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.

Study Type

Observational [Patient Registry]

Primary Outcome

Development and implementation of a web-based Cancer Collaborative Registry at the University of Nebraska Medical Center (UNMC)/Nebraska Medical Center (NMC)

Secondary Outcome

 Procurement and banking of excess biological material for future analysis


Pancreatic Cancer


* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information

Estimated Enrollment


Start Date

November 2013

Completion Date

December 2099

Primary Completion Date

December 2099

Eligibility Criteria

        Inclusion Criteria.

          -  Adult individuals (male and female) who have a personal diagnosis/history of cancer

          -  Adult individuals who have a risk for developing cancer or suspicious clinical

          -  Adult individuals with no history of cancer for normal control registry.

          -  Able to provide consent.

          -  19 years of age or older.

          -  Adult individuals who are able to speak English.

        Exclusion Criteria.

          -  Individuals under age 19.

          -  Individuals unable to provide informed consent by virtue of cognitive impairment.

          -  Anyone who does not meet the above inclusion criteria for this project.

          -  Non-English speaking individuals.




19 Years - 110 Years

Accepts Healthy Volunteers

Accepts Healthy Volunteers


Whitney Goldner, MD, 402-559-3579, [email protected]

Location Countries

United States

Location Countries

United States

Administrative Informations



Organization ID


Responsible Party

Principal Investigator

Study Sponsor

University of Nebraska

Study Sponsor

Whitney Goldner, MD, Principal Investigator, University of Nebraska

Verification Date

February 2022