iCaRe2: Integrated Cancer Repository for Cancer Research
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
Outcome Measures
Primary Outcome Measures
- 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
- 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
- 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
Criteria
Inclusion Criteria.
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Adult individuals (male and female) who have a personal diagnosis/history of cancer
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Adult individuals who have a risk for developing cancer or suspicious clinical findings
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Adult individuals with no history of cancer for normal control registry.
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Able to provide consent.
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19 years of age or older.
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Adult individuals who are able to speak English.
Exclusion Criteria.
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Individuals under age 19.
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Individuals unable to provide informed consent by virtue of cognitive impairment.
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Anyone who does not meet the above inclusion criteria for this project.
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Non-English speaking individuals.
Contacts and Locations
Locations
Site | City | State | Country | Postal Code | |
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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
Investigators
- Principal Investigator: Whitney Goldner, MD, University of Nebraska
Study Documents (Full-Text)
None provided.More Information
Additional Information:
Publications
None provided.- 253-13
- NCT00693368