Literature DB >> 27058463

Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research.

Kelly A Edwards1, Sharon F Terry2,3, Dana Gold4, Elizabeth J Horn5, Mary Schwartz6, Molly Stuart7, Suzanne D Vernon8.   

Abstract

Biobanks are increasingly powerful tools used in translational research, and disease advocacy organizations (DAOs) are making their presence known as research drivers and partners. We examined DAO approaches to biobanking to inform how the enterprise of biobanking can grow and become even more impactful in human health. In this commentary, we outline overarching approaches from successful DAO biobanks. These lessons learned suggest principles that can create a more participant-centric approach and illustrate the key roles DAOs can play as partners in research initiatives. DAO approaches to biobanking for translational research include the following: be outcome driven; forge alliances that are unexpected-build bridges to enhance translation; come ready for success; be nimble, flexible, and adaptable; and remember that people matter. Each of these principles led to particular practices that have increased the translational impact of biobank collections. The research practices discussed can inform partnerships in all sectors going forward.

Entities:  

Mesh:

Year:  2016        PMID: 27058463      PMCID: PMC4991568          DOI: 10.1089/bio.2015.0053

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  25 in total

1.  A call for sharing: adapting pharmaceutical research to new realities.

Authors:  Bernard H Munos; William W Chin
Journal:  Sci Transl Med       Date:  2009-12-02       Impact factor: 17.956

2.  Practice-based research--"Blue Highways" on the NIH roadmap.

Authors:  John M Westfall; James Mold; Lyle Fagnan
Journal:  JAMA       Date:  2007-01-24       Impact factor: 56.272

3.  Development of a rapid, reliable genetic test for pseudoxanthoma elasticum.

Authors:  Yanggu Shi; Sharon F Terry; Patrick F Terry; Lionel G Bercovitch; Gary F Gerard
Journal:  J Mol Diagn       Date:  2007-02       Impact factor: 5.568

4.  Leveraging crowdsourcing to facilitate the discovery of new medicines.

Authors:  Thea C Norman; Chas Bountra; Aled M Edwards; Keith R Yamamoto; Stephen H Friend
Journal:  Sci Transl Med       Date:  2011-06-22       Impact factor: 17.956

5.  Too many roads not taken.

Authors:  Aled M Edwards; Ruth Isserlin; Gary D Bader; Stephen V Frye; Timothy M Willson; Frank H Yu
Journal:  Nature       Date:  2011-02-10       Impact factor: 49.962

6.  A review of the clinical phenotype of 254 patients with genetically confirmed pachyonychia congenita.

Authors:  Mark J Eliason; Sancy A Leachman; Bing-jian Feng; Mary E Schwartz; C David Hansen
Journal:  J Am Acad Dermatol       Date:  2012-01-20       Impact factor: 11.527

7.  Power to the people: participant ownership of clinical trial data.

Authors:  Sharon F Terry; Patrick F Terry
Journal:  Sci Transl Med       Date:  2011-02-09       Impact factor: 17.956

Review 8.  Immunologic aspects of chronic fatigue syndrome. Report on a Research Symposium convened by The CFIDS Association of America and co-sponsored by the US Centers for Disease Control and Prevention and the National Institutes of Health.

Authors:  Timothy R Gerrity; Dimitris A Papanicolaou; Jay D Amsterdam; Stephen Bingham; Ashley Grossman; Terry Hedrick; Ronald B Herberman; Gerhard Krueger; Susan Levine; Nahid Mohagheghpour; Rebecca C Moore; James Oleske; Christopher R Snell
Journal:  Neuroimmunomodulation       Date:  2004       Impact factor: 2.492

9.  How disease advocacy organizations participate in clinical research: a survey of genetic organizations.

Authors:  David C Landy; Margaret A Brinich; Mary Ellen Colten; Elizabeth J Horn; Sharon F Terry; Richard R Sharp
Journal:  Genet Med       Date:  2012-02       Impact factor: 8.822

10.  A large mutational study in pachyonychia congenita.

Authors:  Neil J Wilson; Sancy A Leachman; C David Hansen; Alexandra C McMullan; Leonard M Milstone; Mary E Schwartz; W H Irwin McLean; Peter R Hull; Frances J D Smith
Journal:  J Invest Dermatol       Date:  2011-02-17       Impact factor: 8.551

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