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Topics
- Adverse Drug Events (ADE) (1)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 42 Research Studies DisplayedDurojaiye AB, McGeorge N, Kristen W
Characterizing the utilization of the problem list for pediatric trauma care.
The EHR problem list has the potential to support care coordination among the multidisciplinary care team that cares for pediatric trauma patients. To realize this potential, the need exists to ensure appropriate utilization by formulating acceptable usage and management policy. In this regard, understanding the prevailing utilization pattern is pivotal. To this end, in this study, the investigators analyzed EHR in tandem with trauma registry data at a Level I pediatric trauma center.
AHRQ-funded; HS023837.
Citation: Durojaiye AB, McGeorge N, Kristen W .
Characterizing the utilization of the problem list for pediatric trauma care.
AMIA Annu Symp Proc 2018 Dec 5;2018:404-12..
Keywords: Care Coordination, Children/Adolescents, Electronic Health Records (EHRs), Emergency Department, Health Information Technology (HIT), Hospitals, Registries, Trauma
Rymer JA, Chen AY, Thomas L
Advanced practice provider versus physician-only outpatient follow-up after acute myocardial infarction.
This study examines the prevalence of using advanced practice providers (APPs) for care following myocardial infarction as opposed to physicians due to physician shortages and reimbursement changes. Outpatient cardiology or primary care visits within 90 days of MI among 29,477 Medicare-insured patients aged 65 or older from 364 hospitals were examined from data in the Acute Coronary Treatment Intervention Outcomes Network Registry. Medicare adherence, all-cause readmission risk, mortality, and major adverse cardiovascular events were compared for patients seen by APPs versus physicians only. Patients seen by APPs were more likely to have diabetes mellitus, heart failure, be discharged to a nursing facility, and had more outpatient visits. There was no differences in the factors listed between patients seen by APPs or physicians. Patients seen by APPs were in more need of frequent monitoring and were more likely to have other chronic conditions leading to higher risk of post-MI complications.
AHRQ-funded; HS021092.
Citation: Rymer JA, Chen AY, Thomas L .
Advanced practice provider versus physician-only outpatient follow-up after acute myocardial infarction.
J Am Heart Assoc 2018 Sep 4;7(17):e008481. doi: 10.1161/jaha.117.008481..
Keywords: Cardiovascular Conditions, Elderly, Heart Disease and Health, Medicare, Outcomes, Patient-Centered Outcomes Research, Registries
Bates J, Parzynski CS, Dhruva SS
Quantifying the utilization of medical devices necessary to detect postmarket safety differences: a case study of implantable cardioverter defibrillators.
The purpose of this study was to estimate medical device utilization needed to detect safety differences among implantable cardioverter defibrillators (ICDs) generator models and compare these estimates to utilization in practice. The investigators concluded that small safety differences among ICD generator models are unlikely to be detected through routine surveillance given current ICD utilization in practice, but large safety differences can be detected for most patients at anticipated average adverse event rates.
AHRQ-funded; HS022882.
Citation: Bates J, Parzynski CS, Dhruva SS .
Quantifying the utilization of medical devices necessary to detect postmarket safety differences: a case study of implantable cardioverter defibrillators.
Pharmacoepidemiol Drug Saf 2018 Aug;27(8):848-56. doi: 10.1002/pds.4565..
Keywords: Cardiovascular Conditions, Heart Disease and Health, Medical Devices, Patient Safety, Registries, Surgery
Henderson ML, DiBrito SR, Thomas AG
Landscape of living multiorgan donation in the United States: a registry-based cohort study.
This registry-based cohort study examined the patient characteristics and outcomes associated with living multiorgan donation in the United States. The authors assert that careful documentation of outcomes is needed to ensure ethical practices in selection, informed consent, and postdonation care of this unique donor community.
AHRQ-funded; HS024600.
Citation: Henderson ML, DiBrito SR, Thomas AG .
Landscape of living multiorgan donation in the United States: a registry-based cohort study.
Transplantation 2018 Jul;102(7):1148-55. doi: 10.1097/tp.0000000000002082..
Keywords: Health Services Research (HSR), Patient-Centered Outcomes Research, Policy, Registries, Transplantation
Wey A, Gustafson SK, Salkowski N
Program-specific transplant rate ratios: association with allocation priority at listing and posttransplant outcomes.
The Scientific Registry of Transplant Recipients (SRTR) is considering more prominent reporting of program-specific adjusted transplant rate ratios (TRRs). To enable more useful reporting of TRRs, SRTR updated the transplant rate models to adjust explicitly for components of allocation priority. In this study, the investigators evaluated potential associations between TRRs and components of allocation priority that could indicate programs' ability to manipulate TRRs by denying or delaying access to low-priority candidates.
AHRQ-funded; HS024527.
Citation: Wey A, Gustafson SK, Salkowski N .
Program-specific transplant rate ratios: association with allocation priority at listing and posttransplant outcomes.
Am J Transplant 2018 Jun;18(6):1360-69. doi: 10.1111/ajt.14684..
Keywords: Transplantation, Registries, Health Services Research (HSR)
Wey A, Salkowski N, Kasiske BL
A five-tier system for improving the categorization of transplant program performance.
The purpose of this study was to better inform health care consumers by identifying the differences in transplant program performance. Researchers compared the differentiation of program performance and a simulated misclassification rate of the five-tier system with the previous three-tier system based on the 95 percent credible interval, using data on adult kidney transplants collected from the Scientific Registry of Transplant Recipients database. The study finds that the five-tier system improved differentiation and maintained a lower misclassification rate than programs differing by two tiers, and concludes that the five-tier system can improve the informing of health care consumers about transplant program performance.
AHRQ-funded; HS024527.
Citation: Wey A, Salkowski N, Kasiske BL .
A five-tier system for improving the categorization of transplant program performance.
Health Serv Res 2018 Jun;53(3):1979-91. doi: 10.1111/1475-6773.12726..
Keywords: Transplantation, Provider Performance, Quality of Care, Registries
Kojima T, Harwayne-Gidansky I, Shenoi AN
Cricoid pressure during induction for tracheal intubation in critically ill children: a report from National Emergency Airway Registry for Children.
The objective of this retrospective cohort study was to evaluate the association between cricoid pressure use and the occurrence of regurgitation during tracheal intubation for critically ill children in pediatric intensive care unit (PICU). The investigators found that cricoid pressure during induction and mask ventilation before tracheal intubation in the current ICU practice was not associated with a lower regurgitation rate after adjusting for previously reported confounders.
AHRQ-funded; HS024511.
Citation: Kojima T, Harwayne-Gidansky I, Shenoi AN .
Cricoid pressure during induction for tracheal intubation in critically ill children: a report from National Emergency Airway Registry for Children.
Pediatr Crit Care Med 2018 Jun;19(6):528-37. doi: 10.1097/pcc.0000000000001531.
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Keywords: Children/Adolescents, Critical Care, Children/Adolescents, Registries, Respiratory Conditions
Devine EB, Van Eaton E, Zadworny ME
Automating electronic clinical data capture for quality improvement and research: The CERTAIN Validation Project of Real World Evidence.
Washington State's Surgical Care Outcomes and Assessment Program (SCOAP) is a network of hospitals participating in quality improvement (QI) registries wherein data are manually abstracted from EHRs. To create the Comparative Effectiveness Research and Translation Network (CERTAIN), researchers semi-automated SCOAP data abstraction using a centralized federated data model, created a central data repository (CDR), and assessed whether these data could be used as real world evidence for QI and research. They concluded that semi-automated data abstraction may be useful, although raw data collected as a byproduct of health care delivery is not immediately available for use as real world evidence. New approaches to gathering and analyzing extant data are required.
AHRQ-funded; HS020025.
Citation: Devine EB, Van Eaton E, Zadworny ME .
Automating electronic clinical data capture for quality improvement and research: The CERTAIN Validation Project of Real World Evidence.
eGEMS 2018 May 22;6(1):8. doi: 10.5334/egems.211..
Keywords: Patient-Centered Outcomes Research, Quality Improvement, Registries, Surgery, Electronic Health Records (EHRs)
Stewart EA, Lytle BL, Thomas L
The comparing options for management: patient-centered results for uterine fibroids (COMPARE-UF) registry: Rationale and design.
The purpose of the study was to design and establish a uterine fibroid (UF) registry based in the United States to provide comparative effectiveness data regarding UF treatment. This registry, called Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF), will generate evidence on the comparative effectiveness of different procedural options for UF, in order to help patients and their caregivers make informed decisions that best meet an individual patient's short- and long-term preferences.
AHRQ-funded; HS023418.
Citation: Stewart EA, Lytle BL, Thomas L .
The comparing options for management: patient-centered results for uterine fibroids (COMPARE-UF) registry: Rationale and design.
Am J Obstet Gynecol 2018 May 8. doi: 10.1016/j.ajog.2018.05.004..
Keywords: Comparative Effectiveness, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Registries, Women
Ashlagi I, Bingaman A, Burq M
Effect of match-run frequencies on the number of transplants and waiting times in kidney exchange.
Many U.S. kidney paired donation (KPD) registries have gradually shifted to high-frequency match-runs, raising the question of whether this harms the number of transplants. The authors conducted simulations and found that longer intervals between match-runs do not increase the total number of transplants, and that prioritizing highly sensitized patients is more effective than waiting longer between match-runs for transplanting these patients. Further, increasing arrival rates of new pairs improves both the fraction of transplanted pairs and waiting times.
AHRQ-funded; HS020610.
Citation: Ashlagi I, Bingaman A, Burq M .
Effect of match-run frequencies on the number of transplants and waiting times in kidney exchange.
Am J Transplant 2018 May;18(5):1177-86. doi: 10.1111/ajt.14566..
Keywords: Transplantation, Kidney Disease and Health, Health Services Research (HSR), Policy, Registries
Mehta HB, Sura SD, Adhikari D
Adapting the Elixhauser comorbidity index for cancer patients.
This study was designed to adapt the Elixhauser comorbidity index for 4 cancer-specific populations and compare 3 versions of the Elixhauser comorbidity score with 3 versions of the Charlson comorbidity score for predicting 2-year survival with 4 types of cancer. Using data from the Texas Cancer Registry-linked Medicare data from 2005 to 2011, the researchers found that cancer-specific Elixhauser comorbidity scores performed slightly better than cancer-specific Charlson comorbidity scores. Individual Elixhauser comorbidities performed best.
AHRQ-funded; HS022134.
Citation: Mehta HB, Sura SD, Adhikari D .
Adapting the Elixhauser comorbidity index for cancer patients.
Cancer 2018 May 1;124(9):2018-25. doi: 10.1002/cncr.31269.
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Keywords: Cancer, Elderly, Medicare, Patient-Centered Outcomes Research, Registries
Liang Q, Ward S, Pagani FD
Linkage of Medicare records to the interagency registry of mechanically assisted circulatory support.
This study merged Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) records with CMS Medicare claims regarding adults receiving durable FDA-approved mechanical circulatory support devices (MCSDs) in order to investigate the uncertainty of penetrance of Medicare beneficiaries within INTERMACS. The results indicated that there was an annual increase in CMS and INTERMACS centers performing durable MCSD implants among adults from 2008 to 2013, but the CMS centers outnumbered the INTERMAC centers throughout this period. Representation within INTERMACS of MCSDs implanted in Medicare beneficiaries more than doubled in 2013. The authors conclude that ‘the vast majority’ of Medicare beneficiaries receiving MCSDs are increasingly captured in INTERMACS, and that contemporary studies in INTERMACS are therefore relevant and generalizable to the Medicare population.
AHRQ-funded; HS022535.
Citation: Liang Q, Ward S, Pagani FD .
Linkage of Medicare records to the interagency registry of mechanically assisted circulatory support.
Ann Thorac Surg 2018 May;105(5):1397-402. doi: 10.1016/j.athoracsur.2017.11.044..
Keywords: Cardiovascular Conditions, Heart Disease and Health, Data, Medicare, Registries
Liang Q, Ward S, Pagani FD
Linkage of Medicare records to the interagency registry of mechanically assisted circulatory support.
This study merged Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) records with CMS Medicare claims regarding adults receiving durable FDA-approved mechanical circulatory support devices (MCSDs) in order to investigate the uncertainty of penetrance of Medicare beneficiaries within INTERMACS. The results indicated that there was an annual increase in CMS and INTERMACS centers performing durable MCSD implants among adults from 2008 to 2013, but the CMS centers outnumbered the INTERMAC centers throughout this period. Representation within INTERMACS of MCSDs implanted in Medicare beneficiaries more than doubled in 2013. The authors conclude that ‘the vast majority’ of Medicare beneficiaries receiving MCSDs are increasingly captured in INTERMACS, and that contemporary studies in INTERMACS are therefore relevant and generalizable to the Medicare population.
AHRQ-funded; HS022535.
Citation: Liang Q, Ward S, Pagani FD .
Linkage of Medicare records to the interagency registry of mechanically assisted circulatory support.
Ann Thorac Surg 2018 May;105(5):1397-402. doi: 10.1016/j.athoracsur.2017.11.044..
Keywords: Cardiovascular Conditions, Heart Disease and Health, Data, Medicare, Registries
Fudim M, Liu PR, Shrader P
Mineralocorticoid receptor antagonism in patients with atrial fibrillation: findings from the ORBIT-AF (Outcomes Registry for Better Informed Treatment of Atrial Fibrillation) registry.
Mineralocorticoid receptor antagonist (MRA) therapy may be beneficial to patients with atrial fibrillation (AF), but little is known about their use in patients with AF and subsequent outcomes. In order to better understand MRA use and subsequent outcomes, the investigators performed a retrospective cohort study of the contemporary ORBIT-AF (Outcomes Registry for Better Informed Treatment of Atrial Fibrillation) registry.
AHRQ-funded; HS021092.
Citation: Fudim M, Liu PR, Shrader P .
Mineralocorticoid receptor antagonism in patients with atrial fibrillation: findings from the ORBIT-AF (Outcomes Registry for Better Informed Treatment of Atrial Fibrillation) registry.
J Am Heart Assoc 2018 Apr 13;7(8). doi: 10.1161/jaha.117.007987..
Keywords: Cardiovascular Conditions, Evidence-Based Practice, Heart Disease and Health, Medication, Outcomes, Patient-Centered Outcomes Research, Prevention, Registries, Stroke
Deakyne Davies SJ, Grundmeier RW, Campos DA
The pediatric emergency care applied research network registry: a multicenter electronic health record registry of pediatric emergency care.
In this paper, the authors described the Pediatric Emergency Care Applied Research Network (PECARN) Registry, which demonstrates that emergency department (ED) data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The authors concluded that the Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. They suggested that the data provided be used for benchmarking, clinical quality improvement, and comparative effectiveness research.
AHRQ-funded; HS020270.
Citation: Deakyne Davies SJ, Grundmeier RW, Campos DA .
The pediatric emergency care applied research network registry: a multicenter electronic health record registry of pediatric emergency care.
Appl Clin Inform 2018 Apr;9(2):366-76. doi: 10.1055/s-0038-1651496..
Keywords: Children/Adolescents, Registries, Emergency Department, Electronic Health Records (EHRs), Health Information Technology (HIT)
Fanaroff AC, Li S, Webb LE
An observational study of the association of video- versus text-based informed consent with multicenter trial enrollment: lessons from the PALM Study (Patient and Provider Assessment of Lipid Management).
Video informed consent may enhance the appeal of research and help break down barriers to participation. In this observational study of recruitment in a multicenter registry, sites approved for video consent use enrolled the same number of patients as sites with only traditional text-based informed consent but had faster speed to first patient enrolled and more often enrolled older and nonwhite patients.
AHRQ-funded; HS021092.
Citation: Fanaroff AC, Li S, Webb LE .
An observational study of the association of video- versus text-based informed consent with multicenter trial enrollment: lessons from the PALM Study (Patient and Provider Assessment of Lipid Management).
Circ Cardiovasc Qual Outcomes 2018 Apr;11(4):e004675. doi: 10.1161/circoutcomes.118.004675.
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Keywords: Patient-Centered Outcomes Research, Registries, Research Methodologies
Kamal AH, Kirkland KB, Meier DE
A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science.
In this paper, the authors discuss measurement of the impact of palliative care, which is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. The authors described an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research.
AHRQ-funded; HS023681.
Citation: Kamal AH, Kirkland KB, Meier DE .
A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science.
J Palliat Med 2018 Mar;21(S2):S61-s67. doi: 10.1089/jpm.2017.0354..
Keywords: Palliative Care, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Outcomes, Learning Health Systems, Registries, Patient and Family Engagement
Desai NR, Parzynski CS, Krumholz HM
Patterns of institutional review of percutaneous coronary intervention appropriateness and the effect on quality of care and clinical outcomes.
The researchers sought to determine whether internal review of percutaneous coronary intervention (PCI) appropriateness using appropriate use criteria is associated with differences in procedural appropriateness, quality of care, and patient outcomes. They concluded that there was a modest association between procedural appropriateness and clinical outcomes and a similarly modest correlation between nonacute PCI volume and procedural appropriateness.
AHRQ-funded; HS023000
Citation: Desai NR, Parzynski CS, Krumholz HM .
Patterns of institutional review of percutaneous coronary intervention appropriateness and the effect on quality of care and clinical outcomes.
JAMA Intern Med. 2015 Dec;175(12):1988-90.
Keywords: Cardiovascular Conditions, Patient-Centered Outcomes Research, Heart Disease and Health, Registries
O'Brien EC, Simon DN, Thomas LE
The ORBIT bleeding score: a simple bedside score to assess bleeding risk in atrial fibrillation.
The researchers sought to develop and validate a novel bleeding risk score using routinely available clinical information to predict major bleeding in a large, community-based in atrial fibrillation (AF) population. They concluded that their five-element ORBIT bleeding risk score had better ability to predict major bleeding in AF patients when compared with HAS-BLED and ATRIA risk scores.
AHRQ-funded; HS021092.
Citation: O'Brien EC, Simon DN, Thomas LE .
The ORBIT bleeding score: a simple bedside score to assess bleeding risk in atrial fibrillation.
Eur Heart J 2015 Dec 7;36(46):3258-64. doi: 10.1093/eurheartj/ehv476.
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Keywords: Blood Thinners, Heart Disease and Health, Cardiovascular Conditions, Adverse Drug Events (ADE), Adverse Events, Risk, Registries, Patient-Centered Outcomes Research, Evidence-Based Practice
Goldberg J, Paugh TA, Dickinson TA
Greater volume of acute normovolemic hemodilution may aid in reducing blood transfusions after cardiac surgery.
The researchers describe the relationship between acute normovolemic hemodilution (ANH) and red blood cell (RBC) transfusions after cardiac surgery using a multicenter registry. They found a significant association between ANH and reduced perioperative RBC transfusion in cardiac surgery. Transfusion reduction is most profound with larger volumes of ANH.
AHRQ-funded; HS022535; HS022909.
Citation: Goldberg J, Paugh TA, Dickinson TA .
Greater volume of acute normovolemic hemodilution may aid in reducing blood transfusions after cardiac surgery.
Ann Thorac Surg 2015 Nov;100(5):1581-7; discussion 87. doi: 10.1016/j.athoracsur.2015.04.135.
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Keywords: Cardiovascular Conditions, Surgery, Registries
Hu Y, McMurry TL, Stukenborg GJ
Readmission predicts 90-day mortality after esophagectomy: analysis of surveillance, epidemiology, and end results registry linked to Medicare outcomes.
The purpose of this study was to characterize postesophagectomy readmissions and determine their relationship with subsequent 90-day mortality. It found that one in 5 esophagectomy patients are readmitted early after discharge. Readmitted patients have a 5-fold increase in early mortality.
AHRQ-funded; HS018049.
Citation: Hu Y, McMurry TL, Stukenborg GJ .
Readmission predicts 90-day mortality after esophagectomy: analysis of surveillance, epidemiology, and end results registry linked to Medicare outcomes.
J Thorac Cardiovasc Surg 2015 Nov;150(5):1254-60. doi: 10.1016/j.jtcvs.2015.08.071..
Keywords: Hospital Readmissions, Mortality, Outcomes, Registries, Surgery
Likosky DS, Wallace AS, Prager RL
Sources of variation in hospital-level infection rates after coronary artery bypass grafting: an analysis of the Society of Thoracic Surgeons Adult Heart Surgery Database.
This descriptive study characterized the hospital-level variability in healthcare-acquired infection (HAI) rates across hospitals participating in The Society of Thoracic Surgeons Adult Cardiac Surgery Database. It found substantial hospital-level variation exists in postoperative HAIs among patients undergoing coronary artery bypass graft surgery, driven predominantly by pneumonia.
AHRQ-funded; HS022535; HS022909.
Citation: Likosky DS, Wallace AS, Prager RL .
Sources of variation in hospital-level infection rates after coronary artery bypass grafting: an analysis of the Society of Thoracic Surgeons Adult Heart Surgery Database.
Ann Thorac Surg 2015 Nov;100(5):1570-5; discussion 75-6. doi: 10.1016/j.athoracsur.2015.05.015.
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Keywords: Healthcare-Associated Infections (HAIs), Surgery, Adverse Events, Injuries and Wounds, Registries
Hoopes MJ, Dankovchik J, Weiser T
Uncovering a missing demographic in trauma registries: epidemiology of trauma among American Indians and Alaska Natives in Washington state.
The objectives of this study were to evaluate racial misclassification in a statewide trauma registry and to describe the epidemiology of trauma among the Washington American Indian and Alaska Native (AI/AN) population. Linkage to a state trauma registry improved data quality by correcting racial misclassification, allowing for a comprehensive description of injury patterns for the AI/AN population. Compared to Caucasians, AI/AN sustained more severe injuries with similar postinjury outcomes.
AHRQ-funded; HS019972.
Citation: Hoopes MJ, Dankovchik J, Weiser T .
Uncovering a missing demographic in trauma registries: epidemiology of trauma among American Indians and Alaska Natives in Washington state.
Inj Prev 2015 Oct;21(5):335-43. doi: 10.1136/injuryprev-2014-041419.
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Keywords: Trauma, Registries, Racial and Ethnic Minorities, Health Status, Injuries and Wounds
Marsolo K, Margolis PA, Forrest CB
A digital architecture for a network-based learning health system: integrating chronic care management, quality improvement, and research.
The authors collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System. This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a “data in once” strategy. This required automating a series of reports that support care improvement while also demonstrating the use of observational registry data for comparative effectiveness research.
AHRQ-funded; HS020024; HS022974.
Citation: Marsolo K, Margolis PA, Forrest CB .
A digital architecture for a network-based learning health system: integrating chronic care management, quality improvement, and research.
eGEMS 2015 Aug 17;3(1):1168. doi: 10.13063/2327-9214.1168..
Keywords: Electronic Health Records (EHRs), Registries, Patient-Centered Outcomes Research, Comparative Effectiveness, Health Information Technology (HIT)
Kaplan RM, Irvin VL
AHRQ Author: Kaplan RM
Likelihood of null effects of large NHLBI clinical trials has increased over time.
This study explores whether the number of null results in large National Heart Lung, and Blood Institute (NHLBI) funded trials has increased over time. It found that the number NHLBI trials reporting positive results declined after the year 2000. Prospective declaration of outcomes in RCTs, and the adoption of transparent reporting standards, as required by clinicaltrials.gov, may have contributed to the trend toward null findings.
AHRQ-authored
Citation: Kaplan RM, Irvin VL .
Likelihood of null effects of large NHLBI clinical trials has increased over time.
PLoS One 2015 Aug 5;10(8):e0132382. doi: 10.1371/journal.pone.0132382..
Keywords: Cardiovascular Conditions, Heart Disease and Health, Registries