NHLBI Workshop

Data Needs for Cardiovascular Events, Management, and Outcomes

Resuscitation Outcomes Consortium (ROC) - Dr. Laurie Morrison

Epistry Overview

• Epidemiological Databank for ROC
• Provide population based EMS and outcome data (field and in-hospital)
• Baseline for all ROC interventional trials
• Complementary to existing registries addressing the bias (missing data)
  
  • OHCA deaths (90% in field death rate),
  • EMS data
  • Non trauma centre outcomes
    

Vision

• Shining a light makes a difference
• In other words, a registry is an intervention that in and of itself can improve outcomes in participating sites
  

The Intervention

• An internet based registry of standardized data pertaining to adults, infants and children with OHCA or life-threatening trauma for all ROC centers.

  
  

Inclusion Criteria

• Individuals who experience out of hospital cardiac arrest in ROC communities evaluated by organized EMS personnel;
  • a) who receive external defibrillation administered by anyone, or
  • b) on whom EMS personnel perform chest compressions
    

Through

• Data upload using a web based interface or
• Download from existing data sources initially,
• Work to standardize uniform data collection at the level of the paramedic,
• Implement data quality initiatives and evaluate,
• Facilitate direct electronic transfer
  

Potential Contributions to ROC Outcomes

• Collect inhospital outcomes common to all ROC trials on all registry patients
• Provide population based outcome estimates for CA and Trauma
• Measure the crude pooled estimate of resuscitation success for the consortium- track overtime
  

Potential Contributions to ROC Population

• Share best practices across ROC centers
• Provide web based EMS operational reports and data quality management
• Provide population estimates of program interventions i.e. bystander CPR

Potential Contributions to ROC Studies

• Provide pilot data to define existing standards of care, sample size calculations, duration for protocol development
• Track and define the characteristics of missed patients or excluded patients to report on generalizability
  

Unique Contributions to ROC Productivity

• Quality Administrative Datasets
  • Answer research questions not amenable to randomized controlled trials
  • Evaluate policy through regional surveillance
  • Generate RO1/RO3 & CIHR grants
  • Epidemiological and surveillance manuscripts
    

Why Epistry is important to CV surveillance

• Most CA generate an EMS response
• Most die in the field
• Most Efficacious interventions occur early
• Population based without EMS data lacks validity

ROC Population

• Population 26 million
  • Hospitals >101
  • EMS Systems at least 70
    
• Per Annum
  • 1.8 million EMS transports
  • Trauma 46,000 (95%)
  • Cardiac Arrest 18,000 (5.2%)

Literature Search

• MEDLINE (31)
• EMBase (6)
• Health Star (5)
• Journal of Medical Internet Research 2001 (1)
• CINAHL (8)
• Dissertation abstracts (6)

Favorite Reference

• Cardiac Arrest and Cardiopulmonary Resuscitation Outcome Reports: Update and Simplification of the Utstein Templates for Resuscitation Registries. Circulation. 110(21):3385-3397, Nov 23, 2004

Complementary Data - Linkable Partners

• National Registry Cardiopulmonary Resuscitation (AHA)
  • http://www.nrcpr.org/
• Canadian Cardiovascular Outcomes Research Team (CIHR, HSFC)
  • http://www.ccort.ca/
• Critical Care Research Net
  • http://www.criticalcareresearch.net/
• National Trauma Registries

Web Sites - helpful

• http://www.nemsis.org

Minimum Data Set and Dictionary

• 72 Minimum Data Points
  • Data variable names
  • Data response codes
  • Data dictionary
    • Definitions
    • Source
    • Intent
    • Data entry
    • Judgment

Current Linkage

• Site Specific Survey
  • In-hospital datasets
  • Existing registries
  • Hand abstracted
  • Privacy and ethical issues
    

Probabilistic Matching

• EMS linking resulted in > 90% capture with Sensitivity of 90% and Specificity of 100%.
• OHCA; S. Waien AEM 1997, Trauma: C. Newgard AEM 2005

Peer Review

• ReSS: Highest rated ROC protocol
• Submission to External Agencies - AHA
• Planned submission to NIH RO1

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