Procurement of shared data instruments for Research Electronic Data Capture (REDCap)

REDCap (Research Electronic Data Capture) is a web-based software solution and tool set that allows biomedical researchers to create secure online forms for data capture, management and analysis with minimal effort and training. The Shared Data Instrument Library (SDIL) is a relatively new component of REDCap that allows sharing of commonly used data collection instruments for immediate study use by research teams. Objectives of the SDIL project include: (1) facilitating reuse of data dictionaries and reducing duplication of effort; (2) promoting the use of validated data collection instruments, data standards and best practices; and (3) promoting research collaboration and data sharing. Instruments submitted to the library are reviewed by a library oversight committee, with rotating membership from multiple institutions, which ensures quality, relevance and legality of shared instruments. The design allows researchers to download the instruments in a consumable electronic format in the REDCap environment. At the time of this writing, the SDIL contains over 128 data collection instruments. Over 2500 instances of instruments have been downloaded by researchers at multiple institutions. In this paper we describe the library platform, provide detail about experience gained during the first 25months of sharing public domain instruments and provide evidence of impact for the SDIL across the REDCap consortium research community. We postulate that the shared library of instruments reduces the burden of adhering to sound data collection principles while promoting best practices.

[1]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[2]  Philip R. O. Payne,et al.  Clinical research informatics: challenges, opportunities and definition for an emerging domain. , 2009, Journal of the American Medical Informatics Association : JAMIA.

[3]  James A Welker,et al.  Implementation of electronic data capture systems: barriers and solutions. , 2007, Contemporary clinical trials.

[4]  Ross M. Mullner,et al.  Clinical Epidemiology: The Essentials, 4th Edition , 2006 .

[5]  Rachel L Richesson,et al.  Viewpoint: Data Standards in Clinical Research: Gaps, Overlaps, Challenges and Future Directions , 2007, J. Am. Medical Informatics Assoc..

[6]  L. Morales,et al.  The RAND-36 measure of health-related quality of life , 2001, Annals of medicine.

[7]  James F. Brinkley,et al.  A partnership approach for Electronic Data Capture in small-scale clinical trials , 2011, J. Biomed. Informatics.

[8]  Robert P. DiLaura,et al.  Use of Informatics and Information Technologies in the Clinical Research Enterprise Within US Academic Medical Centers , 2008, Journal of Investigative Medicine.

[9]  Cynthia Helba,et al.  Grid-enabled measures: using Science 2.0 to standardize measures and share data. , 2011, American journal of preventive medicine.

[10]  R. Spitzer,et al.  The PHQ-9: validity of a brief depression severity measure. , 2001, Journal of general internal medicine.

[11]  L. Radloff The CES-D Scale , 1977 .

[12]  Monika M. Wahi,et al.  Case Report: Reducing Errors from the Electronic Transcription of Data Collected on Paper Forms: A Research Data Case Study , 2008, J. Am. Medical Informatics Assoc..

[13]  D E Nelson,et al.  Reliability and validity of measures from the Behavioral Risk Factor Surveillance System (BRFSS). , 2001, Sozial- und Praventivmedizin.

[14]  C. Mackenzie,et al.  A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. , 1987, Journal of chronic diseases.

[15]  R. Fletcher,et al.  Clinical Epidemiology: The Essentials , 1982 .

[16]  Mahoney Fi,et al.  FUNCTIONAL EVALUATION: THE BARTHEL INDEX. , 1965 .

[17]  J. Fries,et al.  The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap Cooperative Group During its First Two Years , 2007, Medical care.

[18]  J. Corrigan Development of a scale for assessment of agitation following traumatic brain injury. , 1989, Journal of clinical and experimental neuropsychology.

[19]  M. Hamilton A RATING SCALE FOR DEPRESSION , 1960, Journal of neurology, neurosurgery, and psychiatry.