The REDCap consortium: Building an international community of software platform partners

Embi, 2013, Clinical research informatics: survey of recent advances and trends in a maturing field, Yearb. Med. Inform., 8, 178 Embi, 2014, Advancing methodologies in Clinical Research Informatics (CRI): foundational work for a maturing field, J. Biomed. Inform., 52, 1, 10.1016/j.jbi.2014.10.007 Kahn, 2012, Clinical research informatics: a conceptual perspective, J. Am. Med. Inform. Assoc., 19, e36, 10.1136/amiajnl-2012-000968 Pober, 2001, Obstacles facing translational research in academic medical centers, FASEB J. Off. Publ. Fed. Am. Soc. Exp. Biol., 15, 2303 Sung, 2003, Central challenges facing the national clinical research enterprise, JAMA, 289, 1278, 10.1001/jama.289.10.1278 May, 2013, The role of technology in translational science, World Med. Health Policy, 5, 389, 10.1002/wmh3.69 Fahy, 2011, Crossing the chasm: information technology to biomedical informatics, J. Investig. Med. Off. Publ. Am. Fed. Clin. Res., 59, 768 Sheetz, 2014, Can small institutes address some problems facing biomedical researchers?, Mol. Biol. Cell., 25, 3267, 10.1091/mbc.e14-05-1017 Etz, 2014, Practice-based innovations: more relevant and transportable than NIH-funded studies, J. Am. Board Fam. Med., 27, 738, 10.3122/jabfm.2014.06.140053 Committee to Review the Clinical and Translational Science Awards Program at the National Center for Advancing Translational Sciences, Board on Health Sciences Policy, Institute of Medicine, The CTSA Program at NIH: Opportunities for Advancing Clinical and Translational Research, National Academies Press (US), Washington (DC), 2013. http://www.ncbi.nlm.nih.gov/books/NBK144067/ (accessed December 10, 2014). National Institutes of Health, Institutional Clinical and Translational Science Award RFA-TR-14-009, (2014). http://grants.nih.gov/grants/guide/rfa-files/RFA-TR-14-009.html (accessed December 10, 2014). Zerhouni, 2006, Clinical research at a crossroads: the NIH roadmap, J. Investig. Med. Off. Publ. Am. Fed. Clin. Res., 54, 171 Guerrero, 2014, NIH career development awards in clinical and translational science award institutions: distinguishing characteristics of top performing sites, Clin. Transl. Sci., 10.1111/cts.12187 Fleurence, 2014, Launching PCORnet, a national patient-centered clinical research network, J. Am. Med. Inform. Assoc. JAMIA, 21, 578, 10.1136/amiajnl-2014-002747 Rose, 2014, Academic medical product development: an emerging alliance of technology transfer organizations and the CTSA, Clin. Transl. Sci., 7, 456, 10.1111/cts.12175 Masys, 2012, Designing a Public Square for Research Computing, Sci. Transl. Med., 4, 149fs32, 10.1126/scitranslmed.3004032 CD2H, CD2H. (n.d.). https://ctsa.ncats.nih.gov/cd2h/ (accessed December 17, 2018). CTSA Program Collaborative Innovation Awards, CTSA Program Collab. Innov. Awards. (n.d.). https://ncats.nih.gov/ctsa/projects/ccia (accessed December 17, 2018). Reis, 2010, Reengineering the national clinical and translational research enterprise: the strategic plan of the national clinical and translational science awards consortium, Acad. Med. J. Assoc. Am. Med. Coll., 85, 463, 10.1097/ACM.0b013e3181ccc877 Ravichandran, 2005, Organizational assimilation of complex technologies: an empirical study of component-based software development, IEEE Trans. Eng. Manag., 52, 249, 10.1109/TEM.2005.844925 Noll, 2011, Global software development and collaboration: barriers and solutions, ACM Inroads., 1, 66, 10.1145/1835428.1835445 Sherif, 2003, Barriers to adoption of software reuse: a qualitative study, Inf. Manage., 41, 159, 10.1016/S0378-7206(03)00045-4 Sherif, 1999, A qualitative model for barriers to software reuse adoption, 47 Nadan, 2004, Software licensing in the 21st century: Are software licenses really sales, and how will the software industry respond, AIPLA Q. J., 32, 555 Goldman, 2005 Harris, 2009, Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support, J. Biomed. Inform., 42, 377, 10.1016/j.jbi.2008.08.010 Petraitiene, 2008, Cerebrospinal fluid and plasma (1→3)-β-d-glucan as surrogate markers for detection and monitoring of therapeutic response in experimental hematogenous candida meningoencephalitis, Antimicrob. Agents Chemother., 52, 4121, 10.1128/AAC.00674-08 Lense, 2013, (A)musicality in Williams syndrome: examining relationships among auditory perception, musical skill, and emotional responsiveness to music, Front. Psychol., 4, 525, 10.3389/fpsyg.2013.00525 Mason, 2015, Peer network counseling with urban adolescents: a randomized controlled trial with moderate substance users, J. Subst. Abuse Treat., 58, 16, 10.1016/j.jsat.2015.06.013 Slusher, 2015, A randomized trial of phototherapy with filtered sunlight in african neonates, N. Engl. J. Med., 373, 1115, 10.1056/NEJMoa1501074 Pang, 2014, Construction and management of ARDS/sepsis registry with REDCap, J. Thorac. Dis., 6, 1293 da Silva, 2013, Glocal clinical registries: pacemaker registry design and implementation for global and local integration–methodology and case study, PloS One, 8, 10.1371/annotation/4df3845a-5099-4b10-b19a-0804cf201345 Backus, 2009, Clinical case registries: simultaneous local and national disease registries for population quality management, J. Am. Med. Inform. Assoc. JAMIA, 16, 775, 10.1197/jamia.M3203 Bellgard, 2013, Dispelling myths about rare disease registry system development, Source Code Biol. Med., 8, 21, 10.1186/1751-0473-8-21 Randolph, 2011, Pediatric acute lung injury and sepsis investigator’s network and the national heart, lung, and blood institute ARDS clinical trials network, critically ill children during the 2009–2010 influenza pandemic in the United States, Pediatrics, 128, e1450, 10.1542/peds.2011-0774 Hastings-Tolsma, 2012 Sewell, 2013, A brief, low-cost intervention improves the quality of ambulatory gastroenterology consultation notes, Am. J. Med., 126, 732, 10.1016/j.amjmed.2013.02.017 McCoy, 2012, A framework for evaluating the appropriateness of clinical decision support alerts and responses, J. Am. Med. Inform. Assoc. JAMIA, 19, 346, 10.1136/amiajnl-2011-000185 Gates, 2014, The initial response to the Boston marathon bombing: lessons learned to prepare for the next disaster, Ann. Surg., 260, 960, 10.1097/SLA.0000000000000914 Archer, 2014, A comparative effectiveness trial of postoperative management for lumbar spine surgery: changing behavior through physical therapy (CBPT) study protocol, BMC Musculoskelet. Disord., 15, 10.1186/1471-2474-15-325 Collins, 2012, A comparison of criterion standard methods to diagnose acute heart failure, Congest. Heart Fail. Greenwich Conn., 18, 262, 10.1111/j.1751-7133.2012.00288.x Choi, 2002, A method for comparing and combining cost-of-illness studies: an example from cardiovascular disease, Chronic Dis. Can., 23, 47 Hartmann, 2014, A comparison of self-esteem and perfectionism in anorexia nervosa and body dysmorphic disorder, J. Nerv. Ment. Dis., 202, 883, 10.1097/NMD.0000000000000215 Smith, 2012, A feasibility study to evaluate breast cancer patients’ knowledge of their diagnosis and treatment, Patient Educ. Couns., 89, 321, 10.1016/j.pec.2012.08.015 Becevic, 2015, User satisfaction with telehealth: study of patients providers, and coordinators, Health Care Manag., 34, 337, 10.1097/HCM.0000000000000081 Anand, 2015, Leveraging electronic tablets and a readily available data capture platform to assess chronic pain in children: the PROBE system, Stud. Health Technol. Inform., 216, 554 Lyon, 2014, The use of Research Electronic Data Capture (REDCap) software to create a database of librarian-mediated literature searches, Med. Ref. Serv. Q, 33, 241, 10.1080/02763869.2014.925379 Klipin, 2014, The process of installing REDCap, a web based database supporting biomedical research: the first year, Appl. Clin. Inform., 5, 916, 10.4338/ACI-2014-06-CR-0054 Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules, 2013. Nathan, 2016, Eulogy for the clinical research center, J. Clin. Invest., 126, 2388, 10.1172/JCI88381 Obeid, 2013, Procurement of shared data instruments for Research Electronic Data Capture (REDCap), J. Biomed. Inform., 46, 259, 10.1016/j.jbi.2012.10.006 Hendershot, 2015, Using the PhenX toolkit to add standard measures to a study, Curr. Protoc. Hum. Genet. Editor. Board Jonathan Haines Al., 86, 1.21.1 McCarty, 2014, PhenX RISING network, PhenX RISING: real world implementation and sharing of PhenX measures, BMC Med. Genomics., 7, 16, 10.1186/1755-8794-7-16 Medical Data Models Portal, (n.d.). https://medical-data-models.org/. Whetzel, 2011, BioPortal: enhanced functionality via new Web services from the National Center for Biomedical Ontology to access and use ontologies in software applications, Nucleic Acids Res., 39, W541, 10.1093/nar/gkr469 Bevans, 2014, Patient-reported outcomes measurement information system (PROMIS®): efficient, standardized tools to measure self-reported health and quality of life, Nurs. Outlook, 62, 339, 10.1016/j.outlook.2014.05.009 This repository contains AWS CloudFormation templates to automatically deploy a REDCap environment that adheres to AWS architectural best practices: vanderbilt-redcap/redcap-aws-cloudformation, Vanderbilt REDCap Group, 2018. https://github.com/vanderbilt-redcap/redcap-aws-cloudformation (accessed December 17, 2018). Japan REDCap Consortium – JREC – Home, (n.d.). https://www.facebook.com/japan.redcap/ (accessed December 17, 2018). First Latin American and Brazilian REDCapCon, (n.d.). http://www.redcapbrasil.com.br/redcapcon/en/redcapcon/en/ (accessed December 17, 2018). Citations – REDCap, (n.d.). https://projectredcap.org/resources/citations/ (accessed December 17, 2018). Natter, 2013, An i2b2-based, generalizable, open source, self-scaling chronic disease registry, J. Am. Med. Inform. Assoc. JAMIA, 20, 172, 10.1136/amiajnl-2012-001042 Mohammed-Rajput, 2011, OpenMRS, a global medical records system collaborative: factors influencing successful implementation, AMIA. Annu. Symp. Proc., 2011, 960 Borner, 2012