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     Collaboratory Products

     
      
      
      
      
    Count= 156
    Assessing-data-quality-brief-versionAssessing Data Quality of Clinical Data for PCTs2/15/2018This document highlights recommendations for assessing the quality of data generated from routine patient care for use in PCTs.
    Coronado GD, et al. J Gen Intern Med 2017Effect of Reminding Patients to Complete Fecal Immunochemical Testing: A Comparative Effectiveness Study of Automated and Live Approaches.10/10/2017This article compares the effectiveness of different forms of reminders for a direct-mail fecal immunochemical test (FIT) program.
    LowEducationSES-Demographic Dataset - Low Education (8 of 8)1/3/2018Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - low education
    PovertySES-Demographic Dataset - Poverty (7 of 8)1/3/2018Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - poverty
    Transformation2SES-Demographic Dataset - Transformation and Geodata (6 of 8)1/3/2018Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - transformation and geodata
    TSOS 2017-SnapshotTSOS Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Trauma Survivors Outcomes and Support (TSOS) PCT
    TIME 2017-SnapshotTiME Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Time to Reduce Mortality in End-Stage Renal Disease (TiME) PCT
    STOP CRC 2017-SnapshotSTOP CRC Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Strategies and Opportunities to Stop Colorectal Cancer (STOP CRC) PCT
    SPOT 2017-SnapshotSPOT Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Suicide Prevention Outreach Trial (SPOT) PCT
    PROVEN 2017-SnapshotPROVEN Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Pragmatic Trial of Video Education in Nursing Homes (PROVEN) PCT
    PPACT 2017-SnapshotPPACT Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Collaborative Care for Chronic Pain in Primary Care (PPACT) PCT
    LIRE 2017-SnapshotLIRE Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Lumbar Imaging with Reporting of Epidemiology (LIRE) PCT
    ICD-Pieces 2017-SnapshotICD-Pieces Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Improving Chronic Disease Management with Pieces (ICD-Pieces) PCT
    ABATE 2017-SnapshotABATE Study Snapshot12/18/2017Study snapshot is a 2-page summary of the Active Bathing to Eliminate (ABATE) Infection PCT
    MedianIncomeSES-Demographic Dataset - Median Income (5 of 8)11/30/2017Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - median income
    HighEducationSES-Demographic Dataset - Level of Education (4 of 8)11/29/2017Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - level of education
    UnemploymentSES-Deomgraphic Dataset: Unemployment (3 of 8)11/29/2017Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - unemployment status
    CrowdedhouseholdSES-Demographic Dataset: Crowded Household (2 of 8)11/29/2017Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - crowded household
    PropertyValueSES-Demographic Dataset: Property Values (1 of 8)11/29/2017Dataset for linking socioeconomic status (SES) and demographic characteristics to EHR data - property values
    Coury J, et al. BMC Health Serv Res. 2017Applying the Plan-Do-Study-Act (PDSA) approach to a large pragmatic study involving safety net clinics6/19/2017This article is about applying the Plan-Do-Study-Act (PDSA) cycle in a pragmatic clinical research study, called the Strategies and Opportunities to STOP Colon Cancer in Priority Populations (STOP CRC), to optimize the research implementation of an automa
    Drs. Briggs and Califf Stakeholder Interview 5-23-17 (Part 2)Dr. Briggs interviews Dr. Califf at the May 2017 Collaboratory Steering Committee meeting (Part 2 of 2)11/1/2017Former NCCIH Director Josephine Briggs, MD, and former FDA Commissioner Robert Califf, MD, reflect on lessons learned from implementing the NIH Collaboratory’s innovative oversight model.
    Petrik AF, et al. J Community Health 2017Predictors of Colorectal Cancer Screening Prior to Implementation of a Large Pragmatic Trial in Federally Qualified Health Centers 7/25/2017This article examined patient-level and neighborhood-level characteristics associated with being up to date with colorectal cancer screening guidelines and associations between these factors and being screened with a fecal test.
    Drs. Briggs and Califf Stakeholder Interview 5-23-17Dr. Briggs interviews Dr. Califf at the May 2017 Collaboratory Steering Committee meeting.10/31/2017NCCIH Director Josephine Briggs, MD, and former FDA Commissioner Robert Califf, MD, reflect on 5 years of NIH Collaboratory accomplishments.
    Weinfurt KP et al. Med Care 2017Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices11/1/2017This article evaluates how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies.
    Drs. Hernandez and Califf Stakeholder Interview 5-23-17Dr. Hernandez inverviews Dr. Califf at the May 2017 Collaboratory Steering Committee meeting.10/25/2017Drs. Hernandez and Califf discuss the Collaboratory's achievements and future directions at the May 2017 Collaboratory Steering Committee meeting.
    Drs. Weinfurt, Curtis, and Hernandez Stakeholder Interview 5-23-17Drs. Weinfurt, Curtis, and Hernandez give an interview at the 2017 Steering Committee Meeting10/23/2017NIH Collaboratory Coordinating Center co-PIs, Kevin Weinfurt, PhD, Lesley Curtis, PhD, and Adrian Hernandez, MD, MHS, discuss the next phase of the NIH Collaboratory program, including what they are most excited about and what success would look like.
    Phenotype Case Study-LIREPhenotyping in Pragmatic Clinical Trials: The LIRE Case Study10/6/2017This document describes challenges and solutions to phenotyping for the Lumbar Imaging with Reporting of Epidemiology (LIRE) Demonstration Project.
    Phenotype Case Study-MURDOCKPhenotyping in Pragmatic Clinical Trials: The MURDOCK Case Study10/4/2017This document describes challenges and solutions to phenotyping for the Measurement to Understand the Reclassification of Disease of Cabarrus/Kannapolis (MURDOCK) Community Registry and Biorepository.
    PCTs DMC Charter TemplatePCTs Data Monitoring Committee Charter Template8/22/2017A charter template for data monitoring committees for pragmatic clinical trials.
    Weinfurt K et al. BMC Med Res Methodol 2017Pragmatic clinical trials embedded in healthcare systems: generalizable lessons from the NIH Collaboratory9/18/2017This article describes the NIH HCS Collaboratory, highlights some of the challenges encountered and solutions developed thus far, and discusses remaining barriers and opportunities for large-scale evidence generation using PCTs.
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     External Resources

     
      
      
      
    Count= 147
      
    9/22/2017A webinar by Thomas Carton and Joanna Ball on the PCORnet Commons' current use and future use and review core features of the site
      
    8/29/2017A webinar by Kathleen McTigue, MD; Karen Coleman, Phd; Roni Zeiger, MD; and Kathryn Burn covering learnings from the PCORnet Bariatric Study project team on including stakeholders in our project
      
    7/11/2017A webinar presented by Kathleen McTigue on how the PaTH network has developed an archive of patient stories to support the development of people-centered research questions in PCORnet and facilitate patient engagement in patient-centered outcomes research
      
    10/23/2017A webinar by a panel of presenters with real-world experience implementing electronic consent within PCORnet.
      
    8/15/2017Changes in Coding of Suicide Attempts or Self-Harm With Transition From ICD-9 to ICD-10
      
    8/15/2017PCORI User Guide to Integrating Patient-Reported Outcomes in Electronic Health Records
      
    6/8/2017A webinar by Joseph M. Coe, MPA, and M. Patricia McAdams, MS, on how to use social media to raise awareness and build community
      
    5/4/2017A webinar by John Muench, MD, MPH, and Thuy Le, MPH, describing current efforts to organize the ADVANCE Clinical Data Research Network electronic health record data
      
    4/4/2017A webinar presented by Dr. Sue Friedman, Founder and Executive Director of FORCE and Co-PI of the ABOUT Patient Powered Research Network
      
    3/7/2017A webinar presented by Michael Weiner, MD, Ronald Peterson, MD, PhD, and Rachel Nosheny, PhD, on the Alzheimer's patient-powered research network tool to facilitate patient-centered clinical research
      
    1/31/2017A webinar presented by Consuelo H. Wilkins, MD, MSCI, on the components of diversity and a review of engaged research approaches needed to address disparities
      
    3/7/2017A discussion paper from the National Academy of Medicine (NAM) that highlights priorities for active engagement of frontline clinicians to advance a learning health system
      
    1/6/2017A free NIH online course on designing and analyzing pragmatic group-randomized trials
      
    8/24/2016An article in Clinical Research in Cardiology summarizing how collaboration among academia, industry, regulatory bodies, policy makers, patients, and electronic health record vendors is critical for the greater use of EHRs in clinical research
      
    3/1/2016An article in Circulation highlighting potential areas of discordance between Good Clinical Practice guidelines and the principles of pragmatic clinical trials and suggesting strategies to streamline study conduct in an ethical manner
      
    12/8/2016An article in the New England Journal of Medicine proposing how the term “real-world evidence” should be understood so that this type of research can fulfill its potential to inform and improve healthcare
      
    11/17/2016An article in the New England Journal of Medicine summarizing highlights from the HHS Final Rule on reporting of results in ClinicalTrials.gov
      
    3/22/2016An article describing the need for collaborations with bidirectional data exchange within and across distributed research networks, using examples from Sentinel, PCORnet, and NIH Research Collaboratory
      
    9/16/2016A presentation on engaging patients as partners throughout the research process in a way that fosters trust
      
    3/28/2016Summary and materials from a PCORnet workshop on building trustworthiness in clinical research initiatives
      
    6/28/2016A presentation on the Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (Alzheimer’s PPRN) and their methods for patient-centered dementia research
      
    7/20/2016A presentation on PCORnet's Colorado Patient Partners in Research Network's experience and tips for reaching stakeholders through social media by Sarah Madrid and Susan Moore, PhD, MSPH
      
    10/19/2016A presentation on strategies for patient outreach and recruitment by Mitchel Lunn, MD, PI of PRIDEnet and Benjamin Nowell, PhD, Co-PI of AR-PoWER, two of PCORnet's Patient-Powered Research Networks (PPRNs)
      
    11/3/2016A presentation on Becoming a PCORnet Brand Ambassador by Lindsay Singler, Julie Schulman, and Jennifer Cook, members of the PCORnet Communications team
      
    7/5/2016Special issue of eGEMs (Generating Evidence & Methods to improve patient outcomes), an open access journal, exploring strategic uses of evidence to transform healthcare delivery systems
      
    9/3/2015An article in Applied Clinical Trials reporting the results of a Clinical Trials Transformation Initiative (CTTI) survey on barriers and potential solutions for clinical trial recruitment
      
    6/1/2016Information on clinical trial regulations country by country, collated by Duke Clinical Research Institute's Regulatory Services
      
    5/17/2016FDA releases draft guidance for using electronic health records  in clinical research
      
    3/1/2016The slide presentation on a model for a central institutional review board (IRB)
      
    3/1/2016Video recording of webinar presented by CTSA and PCORnet on an approach to a central institutional review board (IRB)
    1 - 30Next
     

     Grand Rounds

     
      
      
      
      
    Presenter
    Collaboratory Affiliation
    Considerations for the Return of Genomic ResultsSlides2/16/2018Faucett, Andrew; Rehm, HeidiHarvard Medical School
    Linking Design to Analysis of Cluster Randomized Trials: Covariate Balancing Strategieshttps://www.nihcollaboratory.org/Pages/GR-Slides-2-9-18.pdf2/9/2018Duke University
    Early Progress on the All of Us Research ProgramSlides2/2/2018Denny, JoshuaVanderbilt University
    The Lumbar Imaging with Reporting of Epidemiology (LIRE) Trial: Subsequent Cross-Sectional Imaging Through 90 Days—Preliminary ResultsSlides1/26/2018Heagerty, Patrick; Jarvik, JeffreyUniversity of Washington
    The Healthcare Pivot: Technology and Transformation of HealthcareSlides1/19/2018Schulman, KevinDuke Clinical Research Institute
    Behavioral Economic Principles to Understand and Change Clinician BehaviorSlides1/12/2018
    IMPACT-AFib: An 80,000 person Randomized Trial Using the Sentinel Initiative Platform Slides1/5/2018Platt, Richard; Cocoros, Noelle; Granger, Christopher; Pokorney, Sean
    Does Machine LearningHave a PlaceIn a Learning Health System?Slides12/15/2017Pencina, Michael
    Data and Safety Monitoring in Pragmatic Clinical Trials 12/8/2017Sugarman, Jeremy; Simon, Gregory; Ellenberg, Susan
    Providing a Shared Repository of Detailed Clinical Models for all of Health and Healthcare 12/1/2017Huff. Stanley; Hammond, Ed
    ICD-Pieces: From Planning to Performance11/17/2017Vazquez, Miguel; Oliver, GeorgeUT Southwestern Medical Center
    Results from the ABATE Infection Trial 11/3/2017Huang, Susan; Septimus, EdUniversity of California, Irvine; Hospital Corporation of America (HCA) Clinical Services Group
    Automated Public Health Surveillance Using Electronic Health Record Data10/20/2017Klompas, MichaelHarvard Medical School
    Users’ Guide for Integrating Patient-Reported Outcomes in Electronic Health Records10/13/2017Sndyer, Claire; Wu, AlbertSchool of Public Health; Johns Hopkins University
    Health is More than Healthcare10/6/2017
    Preprints: What, Why Not and How 9/29/2017Krumholz, HarlanYale University School of Medicine
    Improving Evidence Generation for Medical Devices: The New National Evaluation System for Health Technology (NEST)9/22/2017Fleurence, RachaelMedical Device Innovation Consortium
    Who to Include in a Pragmatic Trial? It Depends9/15/2017Dember, Laura; Simon, GregoryDuke Clinical Research Institute
    Leveraging Informatics in Pragmatic Research: Initial Experience in PCORnet 9/8/2017Rothman, RussellVanderbilt University Medical Center
    Thoughts from the Phenotypes, Data Standards &Data Quality Core8/25/2017Richesson, Rachel
    Behavioral Economics: A Versatile Tool for Clinical Research – From Interventions to Participant Engagement8/18/2017Wong, Charlene
    Embedding Clinical Trials Into Care Delivery: The Vanderbilt ExperienceSlidesVideo8/11/2017Bernard, GordonVanderbilt University Medical Center
    Embedding Clinical Trials Into Care Delivery: The Vanderbilt Experience8/11/2017Bernard, GordonVanderbilt University Medical Center
    PCORnet Research Innovations: Engagement, Dissemination, and (Hopefully) Tech Transfer Pilots SlidesVideo8/4/2017Carton, ThomasPCORnet
    The DSMB Role in Pragmatic Trials: NIMH Progress and ChallengesSlidesVideo7/28/2017Ordonez, Anna; Siegel, Galia; Kim, Scott; Comtois, KateNIMH; NIH; University of Washington
    CTTI Registry Trials Project: Evaluation and Design of Registries for Conducting Clinical TrialsSlidesVideo7/21/2017Laschinger, John; Mitchel, JulesClinical Trials Transformation Initiative (CTTI)
    Leveraging Electronic Health Data in a Multinational Clinical Trial: Early Learnings from the HARMONY-Outcomes EHR Ancillary StudySlidesVideo7/14/2017Curtis, Lesley; O'Brien, EmilyDuke Clinical Research Institute
    Ethics and the Precision Medicine Initiative: Reflections from Working on the Central PMI IRBSlidesVideo7/7/2017Kass, NancyJohns Hopkins Berman Institute of Bioethics; School of Public Health
    The Yale Open Data Access (YODA) Project: Lessons Learned in Data SharingSlidesVideo6/30/2017Ross, JosephYale University School of Medicine
    The Sentinel System: A Case for Analysis Ready DataSlidesVideo6/23/2017Platt, Richard; Brown, JeffreyHarvard University
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     Stakeholder Interviews

     
      
    Presenter
      
      
    Count= 51
    PI-Tips-Interview-20172/14/2018Three PIs offer tips for investigators new to the conduct of embedded pragmatic clinical trials
    Sugarman-Weinfurt-Interview-2017Sugarman, Jeremy; Weinfurt, Kevin11/21/2017Jeremy Sugarman, MD, MPH, and Kevin Weinfurt, PhD, reflect on the first 5 years of the Regulatory/Ethics Core.
    Weinfurt-Interview-2017Weinfurt, Kevin11/17/2017Kevin Weinfurt, PhD, reflects on the first 5 years of the PRO Core.
    Vazquez-Interview-2017Vazquez, Miguel11/3/2017An interview with Dr. Vazquez, PI of ICD-Pieces
    Zatzick-Interview-2017Zatzick, Douglas10/27/2017An interview with Dr. Doug Zatzick, PI of the TSOS trial
    Mor-Interview-2017Mor, Vincent10/20/2017An interview with Dr. Vincent Mor, co-PI of PROVEN
    DeLong-Interview-2017DeLong, Elizabeth10/18/2017Liz DeLong, PhD, reflects on the first 5 years of the NIH Collaboratory's Biostatistics and Study Design Core.
    Tambor-Interview-2017Tambor, Ellen10/16/2017Ellen Tambor, a member of the Stakeholder Engagement Core, reflects on the first 5 years of the Core’s work and the challenges ahead.
    Richesson-Hammond-Interview-2017Hammond, W. Ed; Richesson, Rachel10/10/2017Rachel Richesson, PhD, and W. Ed Hammond, PhD, reflect on the first 5 years of the Phenotypes, Data Standards, and Data Quality Core.
    Dember-Larson-Interview-8-27-15Larson, Eric; Dember, Laura8/27/2015Laura Dember, MD, and Eric Larson, MD, MPH, discuss lessons learned in the TiME UH3 Demonstration Project.
    DeBar PPACT Interview 7-27-15DeBar, Lynn7/27/2015Lynn DeBar, PhD, of Kaiser Permanente Center for Health Research, discusses lessons learned in the PPACT UH3 Demonstration Project.
    Jarvik LIRE Interview 7-21-15Jarvik, Jeffrey7/21/2015Jerry Jarvik, MD, MPH, of the University of Washington, discusses lessons learned in the LIRE UH3 Demonstration Project.
    Stakeholder-Interview-Hernandez-Weinfurt-Curtis-04-20-15Curtis, Lesley; Hernandez, Adrian; Weinfurt, Kevin4/20/2015Adrian Hernandez, MD, MHS, Kevin Weinfurt, PhD, and Lesley Curtis, PhD, of Duke University, discuss the future of the NIH Collaboratory at the April 2015 Steering Committee Meeting.
    Coronado Green STOP CRC Interview 6-17-15Coronado, Gloria6/17/2015Gloria Coronado, PhD, of Kaiser Permanente Center for Health Research, and Beverly Green, MD, MPH, of Group Health Research Institute, discuss lessons learned in the STOP CRC UH3 Demonstration Project.
    Simon Interview SPOT 6-11-15Simon, Gregory6/12/2015Greg Simon, MD, MPH, of Group Health Research Institute, discusses lessons learned in the SPOT UH3 Demonstration Project.
    Video-Interview-DeLong-04-20-15DeLong, Elizabeth4/20/2015Liz DeLong, PhD, MA, of Duke University, discusses lessons learned in the NIH Collaboratory’s Biostatistics and Study Design Core at the April 2015 Steering Committee Meeting.
    Video-Interview-Larson-Jarvik-04-20-15Larson, Eric; Jarvik, Jeffrey4/20/2015Eric B. Larson, MD, MPH, of Group Health Research Institute, and Jerry Jarvik, MD, MPH, of the University of Washington, discuss the LIRE Demonstration Project at the April 2015 Steering Committee Meeting.
    Video-Interview-Hammond-04-20-15Hammond, W. Ed4/20/2015W. Ed Hammond, PhD, of Duke University, discusses the work of the NIH Collaboratory’s Phenotypes, Data Standards, and Data Quality Core at the April 2015 Steering Committee Meeting.
    Video-Interview-Vazquez-04-20-15Vazquez, Miguel4/20/2015Miguel Vazquez, MD, of UT Southwestern, discusses progress of the ICD-Pieces Demonstration Project at the April 2015 Steering Committee Meeting.
    Video-Interview-Weinfurt-04-20-15Weinfurt, Kevin4/20/2015Kevin Weinfurt, PhD, of Duke University, discusses the work of the NIH Collaboratory’s Patient-Reported Outcomes Core at the April 2015 Steering Committee Meeting.
    Video-Interview-Zatzick-4-20-15Zatzick, Douglas4/20/2015Douglas Zatzick, MD, of the University of Washington, discusses progress of the TSOS Demonstration Project at the April 2015 Steering Committee Meeting.
    Video-Interview-Larson-Johnson-04-21-15Larson, Eric; Johnson, Karin5/22/2015Eric B. Larson, MD, MPH, and Karin Johnson, PhD, of Group Health Research Institute, discuss lessons learned in the Health Care Systems Interactions Core at the April 2015 Steering Committee Meeting.
    Video-Interview-Mor-04-20-15Mor, Vincent4/20/2015Vincent Mor, PhD, of Brown University, discusses progress of the PROVEN Demonstration Project at the April 2015 Steering Committee Meeting.
    Video-Interview-Platt-Hernandez-04-20-15Platt, Richard; Hernandez, AdrianAdrian Hernandez, MD, MHS, of Duke Clinical Research Institute, and Richard Platt, MD, of Harvard Pilgrim Health Care Institute, discuss knowledge transfer between the NIH Collaboratory and PCORnet at the April 2015 Steering Committee Meeting.
    Video-Interview-Tunis-04-20-15Tunis, Sean4/20/2015Sean Tunis, MD, MSc, of the Center for Medical Technology Policy, discusses the work of the NIH Collaboratory's Stakeholder Engagement Core at the April 2015 Steering Committee Meeting.
    Video-Interview-Briggs-04-20-15Briggs, Josephine4/20/2015Josephine Briggs, MD, of the National Center for Complementary and Integrative Health, discusses the impact of the NIH Collaboratory at the April 2015 Steering Committee Meeting.
    video-interview_WeinfurtWeinfurt, KevinKevin Weinfurt, PhD, discusses the work of the Patient-Reported Outcomes core.
    Video-interview_CurtisCurtis, LesleyLesley Curtis, PhD, discusses the Distributed Research Network.
    Video-interview_HammondHammond, W. EdEd Hammond, PhD, discusses the Phenotypes, Data Standards, and Data Quality core
    video-interview_TunisTunis, SeanSean Tunis, MD, MSC, discusses the work of the Stakeholder Engagement core.
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