iCaRe2: Integrated Cancer Repository for Cancer Research

University of Nebraska (Other)
Overall Status
CT.gov ID

Study Details

Study Description

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 http://icare2project.org) 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.

Study Design

Study Type:
Observational [Patient Registry]
Anticipated Enrollment :
999999 participants
Observational Model:
Time Perspective:
Official Title:
Integrated Cancer Repository for Cancer Research
Actual Study Start Date :
Nov 1, 2013
Anticipated Primary Completion Date :
Dec 1, 2099
Anticipated Study Completion Date :
Dec 1, 2099

Outcome Measures

Primary Outcome Measures

  1. Development and implementation of a web-based Cancer Collaborative Registry at the University of Nebraska Medical Center (UNMC)/Nebraska Medical Center (NMC) [50 years]

    This is a registry that will continue to accrue patients indefinitely

Secondary Outcome Measures

  1. Procurement and banking of excess biological material for future analysis [50 years]

    This is a registry and biobank and will continue to accrue indefinitely

Other Outcome Measures

  1. Collection and banking of blood, DNA, and urine samples for future analysis that will be proposed in future IRB submissions [50 years]

    This is a registry with biobank and accrual will continue indefinitely

Eligibility Criteria


Ages Eligible for Study:
19 Years to 110 Years
Sexes Eligible for Study:
Accepts Healthy Volunteers:

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 findings

  • 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.

Contacts and Locations


Site City State Country Postal Code
1 Penrose Cancer Center Colorado Springs Colorado United States 80907
2 Porter Adventist Hospital Denver Colorado United States 80210
3 Mercy Regional Medical Center Durango Colorado United States 81301
4 St. Anthony Hospital Lakewood Colorado United States 80228
5 Littleton Cancer Center Littleton Colorado United States 80122
6 Longmont Cancer Center Longmont Colorado United States 80501
7 Avista Cancer Center Louisville Colorado United States 80027
8 Parker Adventist Hospital Parker Colorado United States 80138
9 St. Mary Corwin Medical Center Pueblo Colorado United States 81004
10 St. Anthony North Cancer Center Westminster Colorado United States 80228
11 Florida Hospital Memorial Medical Center Daytona Beach Florida United States 32117
12 Florida Hospital DeLand DeLand Florida United States 32720
13 Florida Hospital FISH Orange City Florida United States 32763
14 Florida Hospital Flagler Palm Coast Florida United States 32164
15 Rush-Copley Cancer Care Center Aurora Illinois United States 60504
16 Trinity Medical Center Moline Illinois United States 61265
17 Rush-Copley Healthcare Center Yorkville Illinois United States 60560
18 Parkview Research Center Fort Wayne Indiana United States 46845
19 Community Health Network Indianapolis Indiana United States 46219
20 Community Cancer Center South Indianapolis Indiana United States 46227
21 Community Cancer Center North Indianapolis Indiana United States 46256
22 Community Howard Regional Hospital Kokomo Indiana United States 46902
23 Methodist Jennie Edmundson Hospital Council Bluffs Iowa United States 51503
24 Genesis Medical Center Davenport Iowa United States 52804
25 Abben Cancer Center Spencer Iowa United States 51301
26 Covenant Medical Center, Inc Waterloo Iowa United States 50702
27 Saint Luke's Cancer Instititue - South Overland Park Kansas United States 66213
28 Tulane University New Orleans Louisiana United States 70112
29 Breast Care Specialists of Maine Portland Maine United States 04102
30 Northwest Hospital Randallstown Maryland United States 21133
31 William E Kahlert Regional Cancer Center Westminster Maryland United States 21157
32 Holyoke Medical Center Holyoke Massachusetts United States 01040
33 University of Michigan Health System Ann Arbor Michigan United States 48109
34 Riverwood Healthcare Center Aitkin Minnesota United States 56431
35 Essentia Health-St. Joseph's Medical Center Brainerd Minnesota United States 56401
36 Essentia Health - Duluth Clinic Duluth Minnesota United States 55805
37 St. Luke's Hospital of Duluth Duluth Minnesota United States 55805
38 Lake Region Healthcare Fergus Falls Minnesota United States 56537
39 Avera Cancer Institute- Marshall Marshall Minnesota United States 56258
40 Mercy Hospital - Joplin Joplin Missouri United States 64804
41 Saint Luke's Cancer Institute - East Kansas City Missouri United States 64086
42 Saint Luke's Cancer Institute Kansas City Missouri United States 64111
43 Saint Luke's Cancer Institute - Kansas City North Kansas City Missouri United States 64118
44 Saint Luke's Cancer Institute - Liberty Liberty Missouri United States 64068
45 Heartland Regional Medical Center dba Mosaic Life Care Saint Joseph Missouri United States 64507
46 Bozeman Health Deaconess Hospital Bozeman Montana United States 59715
47 Logan Health Kalispell Montana United States 59901
48 Providence St. Patrick Hospital Montana Cancer Center Missoula Montana United States 59802
49 Mary Lanning Healthcare/Morrison Cancer Center Hastings Nebraska United States 68901
50 Faith Regional Health Services, Carson Cancer Center Norfolk Nebraska United States 68701
51 Great Plains Regional Medical Center North Platte Nebraska United States 69101
52 Avera St. Anthony's Hospital O'Neill Nebraska United States 68763
53 Methodist Estabrook Cancer Center Omaha Nebraska United States 68114
54 Nebraska Methodist Health System Omaha Nebraska United States 68114
55 University of Nebraska Medical Center Omaha Nebraska United States 68198
56 Regional West Health Services Scottsbluff Nebraska United States 69361
57 C.R. Wood Cancer Center, Glens Falls Hospital Glens Falls New York United States 12801
58 Faxton St. Luke's Healthcare/Mohawk Valley Utica New York United States 13501
59 Cape Fear Valley Health System Fayetteville North Carolina United States 28304
60 Essentia Health Fargo North Dakota United States 58103
61 Trinity Hospital Cancer Care Center Minot North Dakota United States 58701
62 Aultman Alliance Community Hospital Alliance Ohio United States 44601
63 Aultman Hospital Canton Ohio United States 44710
64 University of Pittsburgh Pittsburgh Pennsylvania United States 15323
65 Avera Medical Group Oncology and Hematology Aberdeen Aberdeen South Dakota United States 57401
66 Avera Cancer Institute Mitchell South Dakota United States 57301
67 Avera Cancer Institute Sioux Falls South Dakota United States 57105
68 Sanford Health Sioux Falls South Dakota United States 57105
69 Avera Cancer Center Yankton Yankton South Dakota United States 57078
70 Avera Sacred Heart Hospital Yankton South Dakota United States 57078
71 Yankton Medical Clinic Yankton South Dakota United States 57078
72 Rutland Regional Medical Center Rutland Vermont United States 05701
73 Mary Washington Hospital Fredericksburg Virginia United States 22401
74 Ascension St. Elizabeth Hospital Appleton Wisconsin United States 54915
75 Wheaton Franciscan Healthcare - Elmbrook Memorial Hospital Brookfield Wisconsin United States 53045
76 Wheaton Franciscan Healthcare - Reiman Cancer Care Franklin Wisconsin United States 53132
77 Columbia St. Mary's Mequon Wisconsin United States 53097
78 Columbia St. Mary's Milwaukee Wisconsin United States 53211
79 Ascension Mercy Hospital Oshkosh Wisconsin United States 54904
80 Wheaton Franciscan Healthcare - All Saints Racine Wisconsin United States 53405
81 Wheaton Franciscan Healthcare - Wauwatosa Cancer Care Wauwatosa Wisconsin United States 53226

Sponsors and Collaborators

  • University of Nebraska


  • Principal Investigator: Whitney Goldner, MD, University of Nebraska

Study Documents (Full-Text)

None provided.

More Information

Additional Information:


None provided.
Responsible Party:
Whitney Goldner, MD, MD, University of Nebraska
ClinicalTrials.gov Identifier:
Other Study ID Numbers:
  • 253-13
  • NCT00693368
First Posted:
Dec 16, 2013
Last Update Posted:
Feb 24, 2022
Last Verified:
Feb 1, 2022

Study Results

No Results Posted as of Feb 24, 2022