Thyroid Cancer and Tumor Collaborative Registry (TCCR)
A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu ) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2016-01-01
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| Series: | Cancer Informatics |
| Online Access: | https://doi.org/10.4137/CIN.S32470 |
| _version_ | 1818035620639932416 |
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| author | Oleg Shats Whitney Goldner Jianmin Feng Alexander Sherman Russell B. Smith Simon Sherman |
| author_facet | Oleg Shats Whitney Goldner Jianmin Feng Alexander Sherman Russell B. Smith Simon Sherman |
| author_sort | Oleg Shats |
| collection | DOAJ |
| description | A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu ) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. |
| first_indexed | 2024-12-10T06:57:57Z |
| format | Article |
| id | doaj.art-9a29db52647d40d3aeb5274f50251f0e |
| institution | Directory Open Access Journal |
| issn | 1176-9351 |
| language | English |
| last_indexed | 2024-12-10T06:57:57Z |
| publishDate | 2016-01-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Cancer Informatics |
| spelling | doaj.art-9a29db52647d40d3aeb5274f50251f0e2022-12-22T01:58:24ZengSAGE PublishingCancer Informatics1176-93512016-01-011510.4137/CIN.S32470Thyroid Cancer and Tumor Collaborative Registry (TCCR)Oleg Shats0Whitney Goldner1Jianmin Feng2Alexander Sherman3Russell B. Smith4Simon Sherman5Progenomix, Inc., Omaha, NE, USA.College of Medicine, University of Nebraska Medical Center, Omaha, NE, USA.Eppley Institute for Research in Cancer, University of Nebraska Medical Center, Omaha, NE, USA.Eppley Institute for Research in Cancer, University of Nebraska Medical Center, Omaha, NE, USA.Nebraska Methodist Hospital, Omaha, NE, USA.Progenomix, Inc., Omaha, NE, USA.A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu ) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.https://doi.org/10.4137/CIN.S32470 |
| spellingShingle | Oleg Shats Whitney Goldner Jianmin Feng Alexander Sherman Russell B. Smith Simon Sherman Thyroid Cancer and Tumor Collaborative Registry (TCCR) Cancer Informatics |
| title | Thyroid Cancer and Tumor Collaborative Registry (TCCR) |
| title_full | Thyroid Cancer and Tumor Collaborative Registry (TCCR) |
| title_fullStr | Thyroid Cancer and Tumor Collaborative Registry (TCCR) |
| title_full_unstemmed | Thyroid Cancer and Tumor Collaborative Registry (TCCR) |
| title_short | Thyroid Cancer and Tumor Collaborative Registry (TCCR) |
| title_sort | thyroid cancer and tumor collaborative registry tccr |
| url | https://doi.org/10.4137/CIN.S32470 |
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