Sample and data sharing: Observations from a central data repository

被引：6

作者：

Ardini, Mary-Anne ^{[1
]}

Pan, Huaqin ^{[1
]}

Qin, Ying ^{[1
]}

Cooley, Philip C. ^{[1
]}

机构：

[1] RTI Int, Res Triangle Pk, NC 27709 USA

来源：

CLINICAL BIOCHEMISTRY | 2014年 / 47卷 / 4-5期

关键词：

Clinical data repository; Biobank; NIDDK;

D O I：

10.1016/j.clinbiochem.2013.11.014

中图分类号：

R446 [实验室诊断]; R-33 [实验医学、医学实验];

学科分类号：

1001 ;

摘要：

Objectives: From 2003 to 2013, RTI International served as the data repository for the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK). RTI worked closely with two sample repository partners to build and maintain the Central Repository (CR) that made data and samples available to approved requestors. In this paper, we recap aspects of establishing the mechanism; detail the challenges and limitations of data and sample sharing, and explore the future of resource sharing in light of the evolving environment of research funding. Design and methods: Effective maintenance required the system to be flexible and dynamic while at the same time compliant with established data standards. Results: Our years serving as the CR for NIDDK have yielded a number of observations about the difficulties of running a repository, an operation that is by definition dependent on many outside parties whose degree of expertise and efficiency have a direct impact on repository functioning. Conclusion: The bio-banking industry will likely continue to become more globally centralized for studying specific genetic diseases and monitoring the health of our environment. The dynamic relationship between emerging technologies and the infrastructure will be needed to support future research that requires the ability of organizations providing support to remain flexible even while following established standards. (C) 2013 The Canadian Society of Clinical Chemists. Published by Elsevier Inc. All rights reserved.

引用

页码：252 / 257

页数：6

共 11 条

[1]

[Anonymous], 2003, NIH DAT SHAR POL IMP

[2]

Blackman G, BIOBANKING SAVING FU

[3]

Cami J, PROMISING FUTURE BIO

[4]

Florian Heinemann & Sven Kolber GbR, DBCOPY DAT TOOL

[5]

Frey M, FUTURE BIOBANKING

[6]

Horn L, 2012, MARKETING YOUR BIOBA

[7]

Landy DC, 2012, GENET MED, V14, P223, DOI [10.1038/GIM.0b013e3182310ba0, 10.1038/gim.0b013e3182310ba0]

[8] New Models for Large Prospective Studies: Is There a Better Way? [J].

Manolio, Teri A. ;

Weis, Brenda K. ;

Cowie, Catherine C. ;

Hoover, Robert N. ;

Hudson, Kathy ;

Kramer, Barnett S. ;

Berg, Chris ;

Collins, Rory ;

Ewart, Wendy ;

Gaziano, J. Michael ;

Hirschfeld, Steven ;

Marcus, Pamela M. ;

Masys, Daniel ;

McCarty, Catherine A. ;

McLaughlin, John ;

Patel, Alpa V. ;

Peakman, Tim ;

Pedersen, Nancy L. ;

Schaefer, Catherine ;

Scott, Joan A. ;

Sprosen, Timothy ;

Walport, Mark ;

Collins, Francis S. .

AMERICAN JOURNAL OF EPIDEMIOLOGY, 2012, 175 (09) :859-866

[9]

National Institutes of Health, TRANSNIH BIOMEDICAL

[10] 'What's in the NIDDK CDR?'-public query tools for the NIDDK central data repository [J].

Pan, Huaqin ;

Ardini, Mary-Anne ;

Bakalov, Vesselina ;

DeLatte, Michael ;

Eggers, Paul ;

Ganapathi, Laxminarayana ;

Hollingsworth, Craig R. ;

Levy, Joshua ;

Li, Sheping ;

Pratt, Joseph ;

Pugh, Norma ;

Qin, Ying ;

Rasooly, Rebekah ;

Ray, Helen ;

Richardson, Jean E. ;

Riley, Amanda Flynn ;

Rogers, Susan M. ;

Tan, Sylvia ;

Turner, Charles F. ;

White, Stacie ;

Cooley, Philip C. .

DATABASE-THE JOURNAL OF BIOLOGICAL DATABASES AND CURATION, 2013,

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