Development of the myocite biobank: Cost-efficient model of public sector investigator-driven biobank for idiopathic inflammatory myositis

被引:20
作者
Naveen, R. [1 ]
Anuja, Anamika Kumari [1 ]
Rai, Mohit Kumar [1 ]
Agarwal, Vikas [1 ]
Gupta, Latika [1 ]
机构
[1] Sanjay Gandhi Postgrad Inst Med Sci, Dept Clin Immunol & Rheumatol, Lucknow 226014, Uttar Pradesh, India
关键词
Biobank; dermatomyositis; ethics; India; muscle; myositis; polymyositis; urine; COLLECTION; REGISTRIES; STORAGE; TOOLS;
D O I
10.4103/injr.injr_95_20
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Background: Biobanking refers to the cryopreservation of the various biologic samples for future research. In the era of omics, biobanking has emerged as a vital process to aid research, more so for rare diseases. Aims and Methods: We describe herein the development of a biobank for idiopathic inflammatory myopathies (IIMs), a rheumatic illness with low prevalence. This study addresses the sample collection, transport, storage, maintenance, retrieval, and disposal of samples with a focus on cost-effectiveness, limitations, ethics, and legal aspects involved. Discussion: Financial constraints are juxtaposed next to a wealth of clinical data in the developing countries with a large population size and consequently high burden of rare diseases. Fine-tuning efforts toward the development of bio-archival facilities can maximize outcomes from research units in these countries. A time and cost-efficient model can be the first step toward such initiatives in the appropriate setting. Unique ethical, executive, and scientific challenges were encountered by the authors while establishing the MyoCite biobank in a resource-poor setting. The various efforts to foreclose these obstacles are discussed. Conclusion: This brief summarizes the unmet need, unique challenges, and potential solutions based on the authors' experiences gathered while setting up the MyoCite biobank for research in IIM. It also outlines the means and directions for national and global collaborations in the times ahead.
引用
收藏
页码:194 / 199
页数:6
相关论文
共 23 条
[1]   Ambiguity attitudes and myopic loss aversion: Experimental evidence using carnival games [J].
Aggarwal, Divya ;
Damodaran, Uday .
JOURNAL OF BEHAVIORAL AND EXPERIMENTAL FINANCE, 2020, 25
[2]  
[Anonymous], 2010, PROTOCOLS ONLINE
[3]   Human Vastus Lateralis Skeletal Muscle Biopsy Using the Weil-Blakesley Conchotome [J].
Baczynska, Alicja M. ;
Shaw, Sarah ;
Roberts, Helen C. ;
Cooper, Cyrus ;
Sayer, Avan Aihie ;
Patel, Harnish P. .
JOVE-JOURNAL OF VISUALIZED EXPERIMENTS, 2016, (109)
[4]   Identification of Evidence-Based Biospecimen Quality-Control Tools A Report of the International Society for Biological and Environmental Repositories (ISBER) Biospecimen Science Working Group [J].
Betsou, Fotini ;
Gunter, Elaine ;
Clements, Judith ;
DeSouza, Yvonne ;
Goddard, Katrina A. B. ;
Guadagni, Fiorella ;
Yan, Wusheng ;
Skubitz, Amy ;
Somiari, Stella ;
Yeadon, Trina ;
Chuaqui, Rodrigo .
JOURNAL OF MOLECULAR DIAGNOSTICS, 2013, 15 (01) :3-16
[5]   EUSTAR biobanking: recommendations for the collection, storage and distribution of biospecimens in scleroderma research [J].
Beyer, Christian ;
Distler, Joerg H. W. ;
Allanore, Yannick ;
Aringer, Martin ;
Avouac, Jerome ;
Czirjak, Laszlo ;
Cutolo, Maurizio ;
Damjanov, Nemanja ;
Del Galdo, Francesco ;
Fligelstone, Kim ;
Guiducci, Serena ;
Kowal-Bielecka, Otylia ;
van Laar, Jacob M. ;
Martucci-Cerinic, Marco ;
Mueller-Ladner, Ulf ;
Riemekasten, Gabriela ;
Tarner, Ingo H. ;
Tyndall, Alan ;
Kennedy, Ann Tyrrell ;
Valentini, Gabriele ;
Vettori, Serena ;
Walker, Ulrich A. ;
Denton, Christopher ;
Distler, Oliver .
ANNALS OF THE RHEUMATIC DISEASES, 2011, 70 (07) :1178-1182
[6]   Biobanking past, present and future: responsibilities and benefits [J].
De Souza, Yvonne G. ;
Greenspan, John S. .
AIDS, 2013, 27 (03) :303-312
[7]   Community based trials and informed consent in rural north India [J].
DeCosta, A. ;
D'Souza, N. ;
Krishnan, S. ;
Chhabra, M. S. ;
Shihaam, I. ;
Goswami, K. .
JOURNAL OF MEDICAL ETHICS, 2004, 30 (03) :318-323
[8]   The UK Biobank sample handling and storage protocol for the collection, processing and archiving of human blood and urine [J].
Elliott, Paul ;
Peakman, Tim C. .
INTERNATIONAL JOURNAL OF EPIDEMIOLOGY, 2008, 37 (02) :234-244
[9]   CLARITY - ChiLdhood Arthritis Risk factor Identification sTudY [J].
Ellis, Justine A. ;
Ponsonby, Anne-Louise ;
Pezic, Angela ;
Chavez, Raul A. ;
Allen, Roger C. ;
Akikusa, Jonathan D. ;
Munro, Jane E. .
PEDIATRIC RHEUMATOLOGY, 2012, 10
[10]   A Biospecimen Proficiency Testing Program for Biobank Accreditation: Four Years of Experience [J].
Gaignaux, Amelie ;
Ashton, Garry ;
Coppola, Domenico ;
De Souza, Yvonne ;
De Wilde, Annemieke ;
Eliason, James ;
Grizzle, William ;
Guadagni, Fiorella ;
Gunter, Elaine ;
Koppandi, Iren ;
Shea, Katheryn ;
Shi, Tim ;
Stein, Julie A. ;
Sobel, Mark E. ;
Tybring, Gunnel ;
Van den Eynden, Gert ;
Betsou, Fay .
BIOPRESERVATION AND BIOBANKING, 2016, 14 (05) :429-439