The development of common data elements for a multi-institute prostate cancer tissue bank: the Cooperative Prostate Cancer Tissue Resource (CPCTR) experience.

Ashokkumar A Patel,Jonathan Melamed,Jules J Berman,Milton W Datta,Kuei-Fang Tai,Rajiv Dhir,John Gilbertson,André Kajdacsy-Balla,Maarten Bosland,Michael J Becich,Jan Orenstein

doi:10.1186/1471-2407-5-108

Abstract

BackgroundThe Cooperative Prostate Cancer Tissue Resource (CPCTR) is a consortium of four geographically dispersed institutions that are funded by the U.S. National Cancer Institute (NCI) to provide clinically annotated prostate cancer tissue samples to researchers. To facilitate this effort, it was critical to arrive at agreed upon common data elements (CDEs) that could be used to collect demographic, pathologic, treatment and clinical outcome data.MethodsThe CPCTR investigators convened a CDE curation subcommittee to develop and implement CDEs for the annotation of collected prostate tissues. The draft CDEs were refined and progressively annotated to make them ISO 11179 compliant. The CDEs were implemented in the CPCTR database and tested using software query tools developed by the investigators.ResultsBy collaborative consensus the CPCTR CDE subcommittee developed 145 data elements to annotate the tissue samples collected. These included for each case: 1) demographic data, 2) clinical history, 3) pathology specimen level elements to describe the staging, grading and other characteristics of individual surgical pathology cases, 4) tissue block level annotation critical to managing a virtual inventory of cases and facilitating case selection, and 5) clinical outcome data including treatment, recurrence and vital status. These elements have been used successfully to respond to over 60 requests by end-users for tissue, including paraffin blocks from cases with 5 to 10 years of follow up, tissue microarrays (TMAs), as well as frozen tissue collected prospectively for genomic profiling and genetic studies. The CPCTR CDEs have been fully implemented in two major tissue banks and have been shared with dozens of other tissue banking efforts.ConclusionThe freely available CDEs developed by the CPCTR are robust, based on "best practices" for tissue resources, and are ISO 11179 compliant. The process for CDE development described in this manuscript provides a framework model for other organ sites and has been used as a model for breast and melanoma tissue banking efforts.

Highlights

The Cooperative Prostate Cancer Tissue Resource (CPCTR) is a consortium of four geographically dispersed institutions that are funded by the U.S National Cancer Institute (NCI) to provide clinically annotated prostate cancer tissue samples to researchers
In 1999 the National Cancer Institute (NCI), recognizing the need for a multi-center effort in prostate cancer tissue banking, issued an RFA for a consortium effort to collect large numbers of clinically annotated prostate cancer specimens for the research community [2]. This initiative was created after a similar successful NCI Resource that was created for breast tissue called the Cooperative Breast Cancer Tissue Resource (CBCTR) [3,4]
Inventory of resources for CPCTR At each institution, archival specimens from radical prostatectomies, diagnostic needle biopsies, and surgically removed metastatic tissue specimens from 1989 to present were identified from the pathology records

Summary

Introduction

The Cooperative Prostate Cancer Tissue Resource (CPCTR) is a consortium of four geographically dispersed institutions that are funded by the U.S National Cancer Institute (NCI) to provide clinically annotated prostate cancer tissue samples to researchers To facilitate this effort, it was critical to arrive at agreed upon common data elements (CDEs) that could be used to collect demographic, pathologic, treatment and clinical outcome data. Recent advances in the fields of genomics and proteomics are providing novel ways of producing experimental data using biospecimens This shift has lead to the development of robust clinical annotations for the collected tissues, which allows comparative research and in-depth analysis of data among multiple institutions. The CBCTR data elements were used by the CPCTR team to create common data elements (CDEs) for annotating the archival paraffin embedded tissue samples in the prostate resource; the CBCTR does not include frozen tissue collection

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Conclusion