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BRIEF TITLE: Integrated Cancer Repository for Cancer Research

Integrated Cancer Repository for Cancer Research

  • Org Study ID: 253-13
  • Secondary ID:
  • NCT ID: NCT02012699
  • NCT Alias: NCT00693368
  • Sponsor: University of Nebraska - Other
  • Source: University of Nebraska

Brief Summary

The objectives of this project at UNMC and other IRB approved sites is to implement and maintain a comprehensive data and biospecimen bank known as the Integrated Cancer Repository for Cancer Research (iCaRe2). The data registry and biospecimen bank will provide core support services for future IRB approved multidisciplinary research on cancer and other chronic diseases carried out by members of the Fred and Pamela Buffett Cancer Center as well as internal and external research collaborators from different participating institutions/centers.

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) 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.

Overal Status Start Date Phase Study Type
Recruiting November 2013 Observational [Patient Registry]

Primary Outcomes:

Primary Outcome 1 - Measure: Development and implementation of a web-based Cancer Collaborative Registry at the University of Nebraska Medical Center (UNMC)/Nebraska Medical Center (NMC)

Primary Outcome 1 - Time Frame: 25 years


  • Pancreatic Cancer
  • Thyroid Cancer
  • Lung Cancer
  • Esophageal Cancer
  • Thymus Cancer
  • Colon Cancer
  • Rectal Cancer
  • GIST
  • Anal Cancer
  • Bile Duct Cancer
  • Duodenal Cancer
  • Gallbladder Cancer
  • Gastric Cancer
  • Liver Cancer
  • Small Intestine Cancer
  • Peritoneal Surface Malignancies
  • Familial Adenomatous Polyposis
  • Lynch Syndrome
  • Bladder Cancer
  • Kidney Cancer
  • Penile Cancer
  • Prostate Cancer
  • Testicular Cancer
  • Ureter Cancer
  • Urethral Cancer
  • Hypopharyngeal Cancer
  • Laryngeal Cancer
  • Lip Cancer
  • Oral Cavity Cancer
  • Nasopharyngeal Cancer
  • Oropharyngeal Cancer
  • Paranasal Sinus Cancer
  • Nasal Cavity Cancer
  • Salivary Gland Cancer
  • Skin Cancer
  • CNS Tumor
  • CNS Cancer
  • Mesothelioma
  • Breastcancer
  • Leukemia
  • Melanoma
  • Sarcoma
  • Unknown Primary Tumor
  • Multiple Myeloma
  • Ovarian Cancer
  • Endometrial Cancer
  • Vaginal Cancer


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.
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Gender: All

Minimum Age: 19 Years

Maximum Age: 110 Years

Healthy Volunteers: Accepts Healthy Volunteers

Official Information

Name: Whitney Goldner, MD

Role: Principal Investigator

Affiliation: University of Nebraska

Overall Contact

Name: Whitney Goldner, MD

Phone: 402-559-3579


Link: icare2 website


Facility Status Contact
University of Alabama Birmingham
Birmingham, Alabama 35294
United States
Recruiting Charles Wilcox, MD

Penrose Cancer Center
Colorado Springs, Colorado 80907
United States
Recruiting Jodi Harr
Halifax Health Medical Center d/b/a Halifax Health
Daytona Beach, Florida 32114
United States
Recruiting Ruby Anne E Deveras, MD
Florida Hospital Memorial Medical Center
Daytona Beach, Florida 32117
United States
Recruiting Sandy Allten, RN
Florida Hospital FISH
Orange City, Florida 32763
United States
Recruiting Sandy Allten, RN
Florida Hospital Flagler
Palm Coast, Florida 32164
United States
Recruiting Sandy Allten, RN
Rush-Copley Cancer Care Center
Aurora, Illinois 60504
United States
Recruiting Amanda Baker, CCRP
NorthShore University Health System
Evanston, Illinois 60201
United States
Recruiting Kristen Vogel, MS, CGC
Trinity Medical Center
Moline, Illinois 61265
United States
Recruiting David M Spector, MD, PhD
Rush-Copley Healthcare Center
Yorkville, Illinois 60560
United States
Recruiting Amanda Baker, CCRP
Community Cancer Care
Anderson, Indiana 46011
United States
Recruiting Layne Jackson
Community Clinical Research Center
Anderson, Indiana 46011
United States
Recruiting Layne Jackson
Community Hospital of Anderson and Madison County, Inc
Anderson, Indiana 46011
United States
Recruiting Layne Jackson
Parkview Research Center
Fort Wayne, Indiana 46845
United States
Recruiting Neil Sharma, MD

Community Health Network
Indianapolis, Indiana 46219
United States
Recruiting Kelly Verel, BS, CCRP
Community Cancer Center South
Indianapolis, Indiana 46227
United States
Recruiting Kelly Verel, BS, CCRP
Community Cancer Center North
Indianapolis, Indiana 46256
United States
Recruiting Kelly Verel, BS, CCRP
Methodist Jennie Edmundson Hospital
Council Bluffs, Iowa 51503
United States
Recruiting Michael Zlomke, MD
Genesis Medical Center
Davenport, Iowa 52804
United States
Recruiting George Kovach, MD
Mercy Medical Center - North Iowa
Mason City, Iowa 50401
United States
Recruiting Michelle Thiges, RN, BSN
Abben Cancer Center
Spencer, Iowa 51301
United States
Recruiting Jolyn Threlkeld, RN
Covenant Medical Center, Inc
Waterloo, Iowa 50702
United States
Recruiting Kim Maxfield, RN, CCRC
Saint Luke's Cancer Instititue - South
Overland Park, Kansas 66213
United States
Recruiting Andi Wiseman, RN, BSN, OCN
Tulane University
New Orleans, Louisiana 70112
United States
Recruiting Bridgette Collins-Burow, MD, PhD
Central Maine Medical Center
Lewiston, Maine 04240
United States
Recruiting Nicholette L Erickson, MD
Lifebridge Health
Baltimore, Maryland 21215
United States
Recruiting Flavio Kruter, MD
Meritus Center for Clinical Research
Hagerstown, Maryland 21742
United States
Recruiting Michael McCormack, MD
William E Kahlert Regional Cancer Center
Westminster, Maryland 21157
United States
Recruiting Carilynn Hughes, RN, BSN, OCN
Holyoke Medical Center
Holyoke, Massachusetts 01040
United States
Recruiting Lynn Downey, RHIT, CTR
Beth Israel Deaconess Hospital
Plymouth, Massachusetts 02360
United States
Recruiting Laurie Halloran, RN
St. Vincent Hospital
Worcester, Massachusetts 01608
United States
University of Michigan Health System
Ann Arbor, Michigan 48109
United States
Recruiting Michelle Anderson, MD
Avera Cancer Institute- Marshall
Marshall, Minnesota 56258
United States
Recruiting Mark Huber, MD
University of Minnesota
Minneapolis, Minnesota 55455
United States
Recruiting Eric Jensen, MD

Mercy Hospital - Joplin
Joplin, Missouri 64804
United States
Recruiting Rita Glaze, RN
Saint Luke's Cancer Institute - East
Kansas City, Missouri 64086
United States
Recruiting Andi Wiseman, RN, BSN, OCN
Saint Luke's Cancer Institute
Kansas City, Missouri 64111
United States
Recruiting Andi Wiseman, RN, BSN, OCN
Saint Luke's Cancer Institute - Kansas City North
Kansas City, Missouri 64118
United States
Recruiting Andi Wiseman, RN, BSN, OCN
Saint Luke's Cancer Institute - Liberty
Liberty, Missouri 64068
United States
Recruiting Andi Wiseman, RN, BSN, OCN
Heartland Regional Medical Center dba Mosaic Life Care
Saint Joseph, Missouri 64507
United States
Recruiting Robert T Weigand, MD
Kalispell Regional Healthcare dba Glacier View Research Institute
Kalispell, Montana 59901
United States
Recruiting Melissa Hulvat, MD
Providence St. Patrick Hospital Montana Cancer Center
Missoula, Montana 59802
United States
Recruiting Michael Snyder, MD
Saint Francis Cancer Treatment Center at Saint Francis Memorial Health Center
Grand Island, Nebraska 68803
United States
Mary Lanning Healthcare/Morrison Cancer Center
Hastings, Nebraska 68901
United States
Recruiting Shamila Garg, MD

Good Samaritan Hospital/Cancer Center
Kearney, Nebraska 68847
United States
St. Elizabeth's Regional Medical Center
Lincoln, Nebraska 68510
United States
Faith Regional Health Services, Carson Cancer Center
Norfolk, Nebraska 68701
United States
Recruiting Cynthia Montgomery, RN
Great Plains Regional Medical Center
North Platte, Nebraska 69101
United States
Recruiting Lisa Kosmacek
Methodist Estabrook Cancer Center
Omaha, Nebraska 68114
United States
Recruiting Russell Smith, MD

University of Nebraska Medical Center
Omaha, Nebraska 68198
United States
Recruiting Whitney Goldner, MD
Regional West Health Services
Scottsbluff, Nebraska 69361
United States
Recruiting Michele Lambert, RN
St. Peter's Hospital
Albany, New York 12208
United States
Recruiting Ami Negandhi, MD
C.R. Wood Cancer Center, Glens Falls Hospital
Glens Falls, New York 12801
United States
Recruiting Beth Brundage, RN, ORC
Memorial Sloan Kettering Cancer Center
New York, New York 10021
United States
Recruiting Peter Allen
Faxton St. Luke's Healthcare/Mohawk Valley
Utica, New York 13501
United States
Recruiting Atul Butala, MD
Cape Fear Valley Health System
Fayetteville, North Carolina 28304
United States
Recruiting Kenneth Manning, MD

Essentia Health
Fargo, North Dakota 58103
United States
Recruiting Joni Buechler-Price, MD
Trinity Hospital Cancer Care Center
Minot, North Dakota 58701
United States
Recruiting Nadia Smetana
University of Pittsburgh
Pittsburgh, Pennsylvania 15323
United States
Recruiting Randall Brand, MD
Avera Medical Group Oncology and Hematology Aberdeen
Aberdeen, South Dakota 57401
United States
Recruiting Cari Price, RN
Avera Cancer Institute
Mitchell, South Dakota 57301
United States
Recruiting Joni Sevigny
Regional Cancer Care Institute
Rapid City, South Dakota 57701
United States
Avera Cancer Institute
Sioux Falls, South Dakota 57105
United States
Recruiting Charles Longo, MD
Sanford Health
Sioux Falls, South Dakota 57105
United States
Recruiting William Spanos, MD
Rutland Regional Medical Center
Rutland, Vermont 05701
United States
Recruiting Rebecca Denofer, RN, OCN
Wheaton Franciscan Healthcare - Elmbrook Memorial Hospital
Brookfield, Wisconsin 53045
United States
Recruiting Meghan Terry
Wheaton Franciscan Healthcare - Reiman Cancer Care
Franklin, Wisconsin 53132
United States
Recruiting Jonathan Treisman, MD
Wheaton Franciscan Healthcare - All Saints
Racine, Wisconsin 53405
United States
Recruiting Michelle Czechowicz, BSN, CCRP
Wheaton Franciscan Healthcare - Wauwatosa Cancer Care
Wauwatosa, Wisconsin 53226
United States
Recruiting Pamela Phillips, RN, CCRC
University of Genoa
Recruiting Paola Ghiorzo, PhD