Thyroid cancer and tumor collaborative registry (TCCR)

Oleg Shats, Whitney S Goldner, Jianmin Feng, Alexander Sherman, Russell B. Smith, Simon Sherman

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)73-79
Number of pages7
JournalCancer Informatics
Volume15
DOIs
StatePublished - Jan 1 2016

Fingerprint

Thyroid Neoplasms
Registries
Neoplasms
Thyroid Nodule
Medical History Taking
Software
Software Design
Information Dissemination
Feeding Behavior
Practice Guidelines
Life Style
Survival Rate
Quality of Life
Demography
Exercise
Equipment and Supplies

Keywords

  • Biomedical informatics
  • Metadata
  • Registry
  • Software
  • Standardization
  • Thyroid cancer

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Cite this

Thyroid cancer and tumor collaborative registry (TCCR). / Shats, Oleg; Goldner, Whitney S; Feng, Jianmin; Sherman, Alexander; Smith, Russell B.; Sherman, Simon.

In: Cancer Informatics, Vol. 15, 01.01.2016, p. 73-79.

Research output: Contribution to journalArticle

Shats, Oleg ; Goldner, Whitney S ; Feng, Jianmin ; Sherman, Alexander ; Smith, Russell B. ; Sherman, Simon. / Thyroid cancer and tumor collaborative registry (TCCR). In: Cancer Informatics. 2016 ; Vol. 15. pp. 73-79.
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