literature

Challenges and Driving Forces for Business Plans in Biobanking 
Macheiner, T. et al. Biopreservation and Biobanking 2017 Apr 13; 15(2): 121-125. 

The Need for Research Infrastructures: A Narrative Review of Large-Scale Research Infrastructures in Biobanking 
Larsson, A. Biopreservation and Biobanking 2017 Feb 21; Epub. 

Quality Management of Biorepositories 
Grizzle, W.E., et al. Biopreservation and Biobanking 2015 Jun 1; 13(3): 183-194. 

A novel cross-disciplinary multi-institute approach to translational cancer research: lessons learned from Pennsylvania Cancer Alliance Bioinformatics Consortium (PCABC)
Patel A.A., et al. Cancer Inform. 2007 Jun 8;3:255-74.

Case studies of existing human tissue repositories: "best practices" for a biospecimen resource for the genomic and proteomic era
Eiseman E., et al. 2003. Santa Monica, CA: RAND Corporation.

Centralized biorepositories for genetic and genomic research
Ginsburg G.S., Burke T.W. and Febbo P. JAMA. 2008 Mar 19;299(11):1359-61.

Electronic medical records for genetic research: results of the eMERGE Consortium
Kho A.N., et al. Sci Transl Med. 2011 Apr 20;3(79):79re1.

Issues in collecting, processing and storing human tissues and associated information to support biomedical research
Grizzle W.E., et al. Cancer Biomark. 2010;9(1-6):531-49.

Multi-institutional tumor banking: lessons learned from a pancreatic cancer biospecimen repository
Demeure M.J., et al. Pancreas. 2010 Oct;39(7):949-54.

Review of Developing and Organizing an Institutional Biospecimen Repository, edited by Donna E. Hansel and Scott D. Jewell
Bui M. and Pham V. Biopreserv Biobank. 2015 Aug;13(4):303.

The boom and bust cycle of biobanking thinking through the life cycle of biobanks
Tupasela A. and Stephens N. Croat Med J. 2013 Oct 28;54(5):501-3.

The Mayo Clinic Biobank: a building block for individualized medicine
Olson J.E., et al. Mayo Clin Proc. 2013 Sep;88(9):952-62.

What are the biggest challenges and opportunities for biorepositories in the next three to five years?
Betsou F., et al. Biopreserv Biobank. 2010 Jun;8(2):81-8.

Centralized biorepositories for genetic and genomic research
Ginsburg G.S., Burke T.W. and Febbo P. JAMA. 2008 Mar 19;299(11):1359-61.

Experiences with obtaining informed consent for genomic sequencing
Bernhardt B.A., et al. Am J Med Genet A. 2015 Nov;167(11):2635-46.

Public attitudes to human genetic information: People's Panel quantitative study conducted for the Human Genetics Commission
Human Genetics Commission (Great Britain). London: Human Genetics Commission, 2001 March.

Baobab Laboratory Information Management System: Development of an Open-Source Laboratory Information Management System for Biobanking
Bendou, H. et al. Biopreservation and Biobanking. 2017 Apr;15(2): 116-120.

Selecting a Laboratory Information Management System for Biorepositories in Low and Middle-Income Countries: The H3Africa Experience and Lessons Learned
Kyobe, S. et al. Biopreservation and Biobanking. 2017 Apr;15(2): 112-115.

The State of Cloud-Based Biospecimen and Biobank Data Management Tools
Paul S., Gade A., Mallipeddi S. Biopreservation and Biobanking. 2017 Mar 16;15(2).

A call to standardize preanalytic data elements for biospecimens, Part II
Robb J.A., et al. Arch Pathol Lab Med. 2015 Sep;139(9):1125-8.

A decade of experience in the development and implementation of tissue banking informatics tools for intra and inter-institutional translational research
Amin W., et al. J Pathol Inform. 2010 Aug 10;1.

An informatics model for tissue banks Lessons learned from the Cooperative Prostate Cancer Tissue Resource
Patel A.A., et al. BMC Cancer. 2006 May 5;6:120.

Automated web-based request mechanism for workflow enhancement in an academic customer-focused biorepository
McDonald S.A., et al. Biopreserv Biobank. 2012 Feb;10(1):48-54.

BiobankConnect: software to rapidly connect data elements for pooled analysis across biobanks using ontological and lexical indexing
Pang C., et al. J Am Med Inform Assoc. 2015 Jan;22(1):65-75.

Information systems as infrastructure for university research now and in the future
Rice M.L. (Editor) 2012. University of Kansas Merrill Advanced Studies Center (1): 65–75.

Public trust in health information sharing: implications for biobanking and electronic health record systems
Platt J. and Kardia S. J Pers Med. 2015 Feb 3;5(1):3-21.

Sharing and reuse of sensitive data and samples: supporting researchers in identifying ethical and legal requirements
Sariyar M., et al. Biopreserv Biobank. 2015 Aug;13(4):263-70.

Six methodological steps to build medical data warehouses for research
Szirbika N.B., et al. Int J Med Inform. 2006 Sep;75(9):683-91.

The Enterprise Data Trust at Mayo Clinic: a semantically integrated warehouse of biomedical data
Chute C.G., et al. J Am Med Inform Assoc. 2010 Mar-Apr;17(2):131-5.

The informatics challenges facing biobanks: a perspective from a United Kingdom Biobanking Network
Quinlan P.R., et al. Biopreserv Biobank. 2015 Oct;13(5):363-70.

Biobanking with Big Data: A Need for Developing "Big Data Metrics"
Zisis, K. Biopreserv Biobank. 2016 Oct;14(5):450-1.

Ethical Legal and Social Issues of Biobanking: Past, Present, and Future
Bledsoe, M. Biopreserv Biobanking. 2017 Apr;15(2): 142-147

A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States
Garrison N.A., et al. Genet Med. 2015 Nov 19.

Active choice but not too active: Public perspectives on biobank consent models
Simon C.M., et al. Genet Med. 2011 Sep;13(9):821-31.

Alternative consent approaches for biobank research
Maschke K.J. Lancet Oncol. 2006 Mar;7(3):193-4.

"Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose
Petrini C. Soc Sci Med. 2010 Jan;70(2):217-20.

Broad consent for research with biological samples: workshop conclusions
Grady C., et al. Am J Bioeth. 2015;15(9):34-42.

Developing a simplified consent form for biobanking
NIH broad sample consent form language from the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS). 2014.

Dynamic consent: a patient interface for twenty-first century research networks
Kaye J., et al. Eur J Hum Genet. 2015 Feb;23(2):141-6.

EngageUC: developing an efficient and ethical approach to biobanking research at the University of California
Garrett S.B., et al. Clin Transl Sci. 2015 Aug;8(4):362-6.

Facilitating autonomy with broad consent
Spellecy R. Am J Bioeth. 2015;15(9):43-4.

Linking broad consent to biobank governance: support from a deliberative public engagement in California
Garrett S.B., et al. Am J Bioeth. 2015;15(9):56-7.

Models of consent to return of incidental findings in genomic research
Appelbaum P.S., et al. Hastings Cent Rep. 2014 Jul-Aug;44(4):22-32.

Moral concerns and the willingness to donate to a research biobank
Tomlinson T., et al. JAMA. 2015 Jan 27;313(4):417-9.

Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?
Hallinan D. and Friedewald M. Life Sci Soc Policy. 2015;11:1.

Research guideline recommendations for broad consent forms in biobank research and how they are currently addressed in practice
Strech D., et al. Am J Bioeth. 2015;15(9):60-3.

Researchers' views on informed consent for return of secondary results in genomic research
Appelbaum P.S., et al. Genet Med. 2015 Aug;17(8):644-50. 

Should donors be allowed to give broad consent to future biobank research?
Hansson M.G., et al. Lancet Oncol. 2006 Mar;7(3):266-9.

Template for informed consent concerning the donation, storage, and utilization of biological materials as well as collecting, processing, and usage of (related) data in biobanks
Permanent Working Party of the German Medical Ethics Committees approved by the General Assembly. 2013 Sep.

Financial Sustainability of Biobanks: From Theory to Practice
Yuille M., et al. Biopreserv Biobank. 2017 Apr;15(2): 85-92.

Addressing the challenge of financial sustainability in biobanking
Campos A.H., et al. Biopreserv Biobank. 2015 Dec;13(6):387-95.

Biobank finances: a socio-economic analysis and review
Gee S., et al. Biopreserv Biobank. 2015 Dec;13(6):435-51.

Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank
Vaught J., et al. J Natl Cancer Inst Monogr. 2011;2011(42):24-31.

Finding the path to biobank sustainability through sound business planning
Henderson M., et al. Biopreserv Biobank. 2015 Dec;13(6):385-6.

Public biobanks: calculation and recovery of costs
Clément B., et al. Sci Transl Med. 2014 Nov 5;6(261):261fs45.

Sustainability in biobanking
Simeon-Dubach D. and Henderson M.K. Biopreserv Biobank. 2014 Oct;12(5):287-91.

Sustainability in the modern biorepository environment from the perspective of the Tissue Procurement Core at the University of Iowa
Galbraith J.W. Biopreserv Biobank. 2015 Dec;13(6):430-2.

How Biobanks Are Assessing and Measuring Their Financial Sustainability
Brown, T., et al. Biopreserv Biobank. 2016 Nov; 1-7 [Epub].

Methods to Improve Sustainability of a Large Academic Biorepository
Kelly, SM., et al. Biopreserv Biobank. 2016 Nov; 1-6 [Epub].

Achieving and Maintaining Sustainability in Biobanking Through Business Planning, Marketing, and Access
Henderson, MK., et al. Biopreserv Biobank. 2016 Nov; 1-2 [Epub].