Better Tools for Multi-site Research

6-lecture series presented by Dr. Robert A. Harrington of Duke University School of Medicine and Karen Pieper of the Duke Clinical Research Institute and available through the CTN Best Practices website. Designed for investigators and staff with limited formal training in quantitative science, the series addresses statistical issues in trial design, interpretation of statistics in medical literature, methods for statistical analyses, and data and safety monitoring boards.   

From Clinical Trials Networks Best Practices (CTNBP) of Duke Clinical Research Institute (DCRI). Presented by the Duke Clinical Research Institute Statistics group and CTN Best Practices principal investigator, Robert A. Harrington, MD.  https://www.ctnbestpractices.org/edu/ebm/

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This paper sets out the challenges HIPAA can pose to conducting research in practice-based settings and clearly outlines 3 methods for addressing those challenges for researchers working in these settings.   Click here to download.

Pace WD, Staton EW, and Holcomb S. Practice-Based Research Network Studies in the Age of HIPAA. Annals of Family Medicine, May 2005; 3: S38 - S45.   http://www.annfammed.org/cgi/reprint/3/suppl_1/s38.pdf

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This paper describes a number of electronic methods of collecting data within practice-based research networks (PBRNs), summarizes the strengths and limitations of each, and offers considerations that researchers should consider before developing electronic data collection methods.   Click here to download.

Pace WD, Stanton EW. Electronic Data Collection Options for Practice-Based Research Networks. Annals of Family Medicine. May 2005; 3: S21 - S29.   http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1466955&blobtype=pdf

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This paper outlines the incentives for and academic health centers' (AHCs) critical role in enabling, encouraging, and rewarding data sharing. It discusses the unique role that leaders of medical schools and academic-affiliated hospitals can play in supporting this transformation of the research enterprise and proposes that AHCs can and should lead the transition towards a culture of biomedical data sharing.   Click here to download.

Piwowar HA, Becich MJ, Bilofsky H, Crowley RS, 2008 Towards a Data Sharing Culture: Recommendations for Leadership from Academic Health Centers. PLoS Med 5(9): e183. doi:10.1371/journal.pmed.0050183.  http://www.plosmedicine.org/home.action

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These practice data management tips from NIA were specifically written for multi-center studies.   Click here to download.

From the National Institute on Aging (NIA) Clinical Research Study Investigator's Toolbox.   http://www.nia.nih.gov/ResearchInformation/CTtoolbox/

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This description of the purpose and data policies of the database of Genotypes and Phenotypes (dbGaP) may be useful to research networks.  

From the National Center for Biotechnology Information (NCBI).  http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/about.html#dac

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A quick reference brochure on NIH data sharing policies for researchers.  Click here to download.

From the National Institutes of Health.  www.nih.gov

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This guidance provides the NIH policy statement on data sharing and additional information on the implementation of this policy - including goals of data sharing, applicability and implementation of the policy, guidelines for grant writers, and examples of data sharing plans and definitions.   

From the National Institutes of Health.  
http://grants.nih.gov/grants/policy/data_sharing/data_sharing_guidance.htm

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