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Welcome to the Development Resources for the ITMIG Thymic Patient Registry and Tumor Biorepository
To explore the Thymic Patient Registry and Tumor Biorepository click here.
To track the discussions, meeting notes, presentations, data models and other resources used to develop the ITMIG Database, review the documents on this web page.
The ITMIG effort at cceHUB is led by
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Pat Loehrer, Director of the Indiana University Simon Cancer Center; Associate Dean for Cancer Research, Indiana University School of Medicine; and H.H. Gregg Professor of Oncology, Indiana University School of Medicine
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Frank Detterbeck, Professor of Surgery (Thoracic Surgery); Chief, Thoracic Surgery; Surgical Director, Thoracic Oncology; Associate Director, Clinical Affairs at Yale Cancer Center
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James Huang, surgeon, Sloan-Kettering Cancer Center specializing in the treatment of cancers of the chest including lung cancer, esophageal cancer, thymoma, thymic carcinoma, mediastinal tumors, lung metastases, and mesothelioma
The research effort to design and build a Thymic Patient Registry and Biorepository Database is coordinated with ITMIG, the International Thymic Malignancy Interest Group. The idea for ITMIG was formed at two meetings convened with the purpose of enhancing international teamwork. The meetings (NYC in 2007; MD Anderson in 2008) were organized by the Foundation for Thymic Cancer Research and attended by many of the leaders in this field . The Foundation is a patient and family organization focused on both patient advocacy and promotion of research. The two meetings led to several collaborative initiatives and publications, including several meta-analyses and NCCN guidelines for the management of thymic malignancies. The meetings also highlighted the need for greater infrastructure to foster true prospective collaboration. The cceHUB database effort described and implemented here is related to work by the ITMIG Database Work group.
The cceHUB database, supported by web-based data contribution methods and web data views for explorations and analysis, will be designed and created by the research team at the Rosen Center for Advanced Computing led by Ann Christine Catlin with Sumudinie Fernando, Sudheera Fernando, Puneet Gupta and Preeti Rao.
A description of the documents at this site follows:
- ITMIG Data Elements (versions 1.0 and 2.0) describe data elements considered for the Thymic Patient Registry and Biorepository Database data model. The versions progressively refine the data elements, and the final version will specify our finalized view of the data elements that should be included in the databse.
- Database Model EER (version 4.0) is the most recent version of the enhanced entity relationship diagram for the Thymic Patient Registry and Biorepository Database.
- NCCN Thymic Guidelines 2011 presents the newest Guidelines for treatment of thymomas from the National Comprehensive Cancer Network (NCCN). This document also provides some algorithms for treatment.
- ESTS Stage III-IV Thymoma Dataset is an excel spreadsheet designed by a group from Europe who is also creating a thymoma database to collect data. The spreadsheet is their data collection form, and is a much simpler data model than the one created for the cceHUB database. Each line in the spreadsheet represents one patient, with all of their diagnosis, surgery, chemo, radiation, pathology data entered is a single row. This group may ask hospitals and physicians to send them excel spreadsheets filled out with the data.
- Contemporary Clinical Trials Rubinstein Rare Disease HUB and Lancet 2010 Global Rare Diseases Registry are articles describing other research efforts to create a global rare rare disease patient registry linked to a rare diseases biorepository database.
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