Thyroid Cancer and Tumor Collaborative Registry (TCCR)

Area of Science:

• Oncology
• Bioinformatics
• Data Management

Background:

• Thyroid cancer (TC) and thyroid nodules (TN) require robust data collection for research.
• Existing systems may lack comprehensive data integration and biobanking capabilities.
• Need for a secure, sustainable platform for managing TC/TN patient data and biospecimens.

Purpose of the Study:

• To describe the development and capabilities of the Thyroid Cancer and Tumor Collaborative Registry (TCCR).
• To highlight the integration of a biobank management system (OpenSpecimen) for biospecimen annotation.
• To showcase the system's technical and organizational framework for data collection and management.

Main Methods:

• Web-based registry (TCCR) coupled with OpenSpecimen for biobanking.
• Collection of demographic, lifestyle, clinical, and quality of life data.
• Implementation of metadata-driven architecture, data sharing standards, Agile methodology, SaaS, and confederation model.

Main Results:

• The TCCR successfully collects and manages diverse data for TC and TN patients.
• The system integrates biospecimen data through OpenSpecimen.
• Currently contains data on 2,261 subjects and over 28,000 biospecimens.

Conclusions:

• The TCCR provides a secure, reliable, user-friendly, and self-sustainable system for TC and TN data.
• The registry is adaptable and compatible with various devices and evolving environments.
• Collected data and samples are crucial for advancing diagnostic, prevention, treatment, and survivorship strategies for TC.