2023
Data Sharing — A New Era for Research Funded by the U.S. Government
Ross J, Waldstreicher J, Krumholz H. Data Sharing — A New Era for Research Funded by the U.S. Government. New England Journal Of Medicine 2023, 389: 2408-2410. PMID: 37966303, DOI: 10.1056/nejmp2308792.Peer-Reviewed Original ResearchClinical trial data sharing: a cross-sectional study of outcomes associated with two U.S. National Institutes of Health models
Rowhani-Farid A, Grewal M, Solar S, Eghrari A, Zhang A, Gross C, Krumholz H, Ross J. Clinical trial data sharing: a cross-sectional study of outcomes associated with two U.S. National Institutes of Health models. Scientific Data 2023, 10: 529. PMID: 37553403, PMCID: PMC10409750, DOI: 10.1038/s41597-023-02436-0.Peer-Reviewed Original ResearchMeSH KeywordsClinical Trials as TopicCross-Sectional StudiesInformation DisseminationNational Cancer Institute (U.S.)National Institutes of Health (U.S.)United States
2021
Characteristics of available studies and dissemination of research using major clinical data sharing platforms
Vazquez E, Gouraud H, Naudet F, Gross CP, Krumholz HM, Ross JS, Wallach JD. Characteristics of available studies and dissemination of research using major clinical data sharing platforms. Clinical Trials 2021, 18: 657-666. PMID: 34407656, PMCID: PMC8595516, DOI: 10.1177/17407745211038524.Peer-Reviewed Original ResearchConceptsData sharing platformData requestsSharing platformData Repository Information Coordinating CenterOpen accessAccess ProjectStudy metadataProject platformYale Open Data Access ProjectData SpherePlatform characteristicsPlatform websiteRequestsAdditional requestsPlatformWebsitesInformationAccessMetadataAvailable informationRate of disseminationDocumentationProjectDisseminationMetricsLeveraging Open Science to Accelerate Research
Kadakia KT, Beckman AL, Ross JS, Krumholz HM. Leveraging Open Science to Accelerate Research. New England Journal Of Medicine 2021, 384: e61. PMID: 33761227, DOI: 10.1056/nejmp2034518.Commentaries, Editorials and Letters
2020
Time for NIH to lead on data sharing
Sim I, Stebbins M, Bierer BE, Butte AJ, Drazen J, Dzau V, Hernandez AF, Krumholz HM, Lo B, Munos B, Perakslis E, Rockhold F, Ross JS, Terry SF, Yamamoto KR, Zarin DA, Li R. Time for NIH to lead on data sharing. Science 2020, 367: 1308-1309. PMID: 32193313, DOI: 10.1126/science.aba4456.Commentaries, Editorials and LettersUpdating insights into rosiglitazone and cardiovascular risk through shared data: individual patient and summary level meta-analyses
Wallach JD, Wang K, Zhang AD, Cheng D, Grossetta Nardini HK, Lin H, Bracken MB, Desai M, Krumholz HM, Ross JS. Updating insights into rosiglitazone and cardiovascular risk through shared data: individual patient and summary level meta-analyses. The BMJ 2020, 368: l7078. PMID: 32024657, PMCID: PMC7190063, DOI: 10.1136/bmj.l7078.Peer-Reviewed Original ResearchMeSH KeywordsCardiovascular DiseasesHumansHypoglycemic AgentsInformation DisseminationRandomized Controlled Trials as TopicRisk FactorsRosiglitazoneConceptsIndividual patient-level dataCardiovascular related deathsCardiovascular riskMyocardial infarctionRelated deathsSummary-level dataHeart failureOdds ratioSystematic reviewIncreased cardiovascular riskMore myocardial infarctionsHeart failure eventsCochrane Central RegistryAcute myocardial infarctionMyocardial infarction eventsPatient-level dataRandom-effects modelWeb of ScienceAnalysis of trialsEligible trialsComposite outcomeAdverse eventsContinuity correctionControlled TrialsRosiglitazone treatment
2018
Overview and experience of the YODA Project with clinical trial data sharing after 5 years
Ross JS, Waldstreicher J, Bamford S, Berlin JA, Childers K, Desai NR, Gamble G, Gross CP, Kuntz R, Lehman R, Lins P, Morris SA, Ritchie JD, Krumholz HM. Overview and experience of the YODA Project with clinical trial data sharing after 5 years. Scientific Data 2018, 5: 180268. PMID: 30480665, PMCID: PMC6257043, DOI: 10.1038/sdata.2018.268.Peer-Reviewed Original ResearchThe 21st Century Cures Act and electronic health records one year later: will patients see the benefits?
Lye CT, Forman HP, Daniel JG, Krumholz HM. The 21st Century Cures Act and electronic health records one year later: will patients see the benefits? Journal Of The American Medical Informatics Association 2018, 25: 1218-1220. PMID: 30184156, PMCID: PMC7646899, DOI: 10.1093/jamia/ocy065.Peer-Reviewed Original ResearchConceptsElectronic health recordsHealth recordsHealth information technologyInformation exchange networkHealth information exchangeData sharingHealth information exchange networkInformation technologyCentury Cures ActInformation exchangeInteroperabilityHealth dataCures ActImplementationAccessResearch initiativesRequirementsExchange networksSharingCertification requirementsNetworkTechnologyPotential benefitsRulesEarly Experiences With Journal Data Sharing Policies: A Survey of Published Clinical Trial Investigators.
Tannenbaum S, Ross JS, Krumholz HM, Desai NR, Ritchie JD, Lehman R, Gamble GM, Bachand J, Schroter S, Groves T, Gross CP. Early Experiences With Journal Data Sharing Policies: A Survey of Published Clinical Trial Investigators. Annals Of Internal Medicine 2018, 169: 586-588. PMID: 30014127, DOI: 10.7326/m18-0723.Peer-Reviewed Original ResearchMeSH KeywordsClinical Trials as TopicHumansInformation DisseminationPeriodicals as TopicSurveys and Questionnaires
2017
Data Sharing and Cardiology Platforms and Possibilities
Dey P, Ross JS, Ritchie JD, Desai NR, Bhavnani SP, Krumholz HM. Data Sharing and Cardiology Platforms and Possibilities. Journal Of The American College Of Cardiology 2017, 70: 3018-3025. PMID: 29241491, DOI: 10.1016/j.jacc.2017.10.037.Commentaries, Editorials and LettersMerits of Data Sharing The Digitalis Investigation Group Trial
Angraal S, Ross JS, Dhruva SS, Desai NR, Welsh JW, Krumholz HM. Merits of Data Sharing The Digitalis Investigation Group Trial. Journal Of The American College Of Cardiology 2017, 70: 1825-1827. PMID: 28958337, DOI: 10.1016/j.jacc.2017.07.786.Peer-Reviewed Original ResearchClinical Trials as TopicDigitalis GlycosidesHeart FailureHumansInformation DisseminationPublicationsData Escrow and Clinical Trial Transparency.
Krumholz HM, Kim J. Data Escrow and Clinical Trial Transparency. Annals Of Internal Medicine 2017, 166: 893-894. PMID: 28384786, DOI: 10.7326/m17-0743.Peer-Reviewed Original Research
2016
Data Acquisition, Curation, and Use for a Continuously Learning Health System
Krumholz HM, Terry SF, Waldstreicher J. Data Acquisition, Curation, and Use for a Continuously Learning Health System. JAMA 2016, 316: 1669-1670. PMID: 27668668, DOI: 10.1001/jama.2016.12537.Peer-Reviewed Original ResearchArtificial IntelligenceData CurationHealth Information ExchangeInformation DisseminationMachine LearningMedical InformaticsOpen Access Platforms for Sharing Clinical Trial Data
Ross JS, Krumholz HM. Open Access Platforms for Sharing Clinical Trial Data. JAMA 2016, 316: 666-666. PMID: 27532929, DOI: 10.1001/jama.2016.8794.Commentaries, Editorials and LettersThe Yale Open Data Access (YODA) Project — A Mechanism for Data Sharing
Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) Project — A Mechanism for Data Sharing. New England Journal Of Medicine 2016, 375: 403-405. PMID: 27518657, DOI: 10.1056/nejmp1607342.Peer-Reviewed Original ResearchMeSH KeywordsBiomedical ResearchClinical Trials as TopicEditorial PoliciesInformation DisseminationPeriodicals as TopicPreprints for the life sciences
Berg JM, Bhalla N, Bourne PE, Chalfie M, Drubin DG, Fraser JS, Greider CW, Hendricks M, Jones C, Kiley R, King S, Kirschner MW, Krumholz HM, Lehmann R, Leptin M, Pulverer B, Rosenzweig B, Spiro JE, Stebbins M, Strasser C, Swaminathan S, Turner P, Vale RD, VijayRaghavan K, Wolberger C. Preprints for the life sciences. Science 2016, 352: 899-901. PMID: 27199406, DOI: 10.1126/science.aaf9133.Peer-Reviewed Original ResearchAvailability of Clinical Trial Data From Industry‐Sponsored Cardiovascular Trials
Murugiah K, Ritchie JD, Desai NR, Ross JS, Krumholz HM. Availability of Clinical Trial Data From Industry‐Sponsored Cardiovascular Trials. Journal Of The American Heart Association 2016, 5: e003307. PMID: 27098969, PMCID: PMC4859296, DOI: 10.1161/jaha.116.003307.Peer-Reviewed Original ResearchMeSH KeywordsAccess to InformationCardiotonic AgentsCardiovascular DiseasesDrug IndustryHumansInformation DisseminationRandomized Controlled Trials as TopicConceptsIndividual participant-level dataLarge cardiovascular trialsCardiovascular trialsParticipant-level dataClinical trial dataPharmaceutical companiesMajor pharmaceutical companiesIndustry-sponsored clinical trialsInterventional trialsAvailable trialsClinical trialsTrial dataTrialsPatientsSpecific reasons
2015
The End of Journals
Krumholz HM. The End of Journals. Circulation Cardiovascular Quality And Outcomes 2015, 8: 533-534. PMID: 26555127, PMCID: PMC5322965, DOI: 10.1161/circoutcomes.115.002415.Peer-Reviewed Original ResearchWhy data sharing should be the expected norm
Krumholz HM. Why data sharing should be the expected norm. The BMJ 2015, 350: h599. PMID: 25655137, DOI: 10.1136/bmj.h599.Peer-Reviewed Original ResearchHospital Variation in Quality of Discharge Summaries for Patients Hospitalized With Heart Failure Exacerbation
Al-Damluji MS, Dzara K, Hodshon B, Punnanithinont N, Krumholz HM, Chaudhry SI, Horwitz LI. Hospital Variation in Quality of Discharge Summaries for Patients Hospitalized With Heart Failure Exacerbation. Circulation Cardiovascular Quality And Outcomes 2015, 8: 77-86. PMID: 25587091, PMCID: PMC4303507, DOI: 10.1161/circoutcomes.114.001227.Peer-Reviewed Original ResearchConceptsDays of dischargeDischarge summary qualityDischarge summariesHeart failureHeart Failure Outcome StudyHeart failure exacerbationHospital-level variationHospital-level performanceSingle-site studyMedian hospitalHospital courseDischarge weightHospital variationVolume statusAdverse outcomesOutcome studiesConsensus conferencePatientsHospitalCare toolsPhysiciansInadequate qualityDaysExacerbationSummary