NHLBI Workshop
Data Needs for Cardiovascular Events, Management, and Outcomes

Hilton Washington DC/Silver Spring
Silver Spring, MD

May 26-27, 2005
Workshop Agenda and Summary of Presentations

Back to Executive Summary

TABLE OF CONTENTS

Workshop Objectives:

  1. To describe the current knowledge base provided by ongoing registries, surveys, and research studies on the incidence/prevalence of acute cardiovascular events and the clinical management and patient outcomes following these events.

  2. To determine and address the need for population-based prospective data on the incidence and prevalence of acute cardiovascular events, short- and long-term clinical management patterns, and patient outcomes following these events.

  3. To suggest possible study designs, including potential opportunities for using and linking existing data sources.

Back to Top

Day 1

8:30 am             Welcome, introduction, charge to group                                                                                                                    

Question 1:

What are the current data needs concerning the incidence and prevalence of acute CV events and the short-and long-term medical practice patterns, quality of care, and health outcomes following these events?

8:45-11:00

Early Morning Session: Presentations describing current knowledge about the incidence and prevalence, medical practice patterns, quality of care, and patient outcomes for each of the 4 proposed cardiovascular (CV) events (sudden cardiac arrest, acute coronary syndromes, stroke, and congestive heart failure) to include:

  • Public health burden of the disease
  • Existence of established standards of care (such as national practice guidelines, performance measures, and quality initiatives) for short- and long-term disease management
  • Current knowledge about the incidence and prevalence, medical practice patterns, quality of care, and patient outcomes of the 4 CV events
  • Existing surveillance systems and cohort studies that collect these data
    • What data do they provide?
    • What are their limitations?
  • Gaps in present knowledge

Moderator: Dr. Robertson

8:45 am             Sudden Cardiac Arrest -- Dr. Ornato

9:15 am             Acute Coronary Syndromes -- Dr. Krumholz

9:45 am            BREAK

10:00 am           Stroke -- Dr. Howard

10:30 am           Heart Failure -- Dr. Ofili

11:00-12:15

Late Morning Session: Presentations on federally-funded registries/ surveillance/ quality improvement measurement systems focusing on:               

  • Design/Infrastructure
  • Strengths and limitations
  • Lessons learned
  • Opportunity to partner or piggyback to address data needs in CV incidence/prevalence, care and outcomes
  • Value as a model for new studies to address data needs in CV incidence/prevalence, care and outcomes

Moderator: Dr. Robertson

11:00 am           National Electronic Disease Surveillance System (CDC) -- Dr. Broome

11:15 am           Paul Coverdell Stroke Registry (CDC) -- Dr. Zheng

11:30 am           Agency for Healthcare Research and Quality (AHRQ) -- Dr. Burstin

11:45 am           Center for Medicare & Medical Services (CMS) -- Dr. Salive

12:00 noon         National Ambulatory Medical Care Survey (NCHS) -- Dr. Sisk

12:15 am           LUNCH

1:30-5:00

Afternoon Session: Presentations on health care delivery systems and other large surveillance programs and data system focusing on:                      


  • Design/Infrastructure
  • Strengths and limitations
  • Lessons learned
  • Opportunity to partner or piggyback to address data needs in CV
  • Value as a model for new studies to address data needs in CV incidence/prevalence, care and outcomes

Moderator: Dr. Burke

1:30 pm         Health care delivery systems and/or databases

2:15 pm         Other Surveillance Systems/Registries:

3:15 pm         BREAK

3:30 pm         Studies assessing clinical management patterns and/or patient outcome for:

4:15 pm         Other operational issues to be considered

  • * Recruitment/data collection -- Dr. Goldberg
    - Obstacles to accessing in-and outpatient medical records
    - HIPAA, consent, and confidentiality issues
    - Events adjudication
  • * Data management -- Dr. Rosamond
    - Infrastructure/coordination
    - Promoting use of data
    - Ethical issues (e.g., informing patients of sub-optimal clinical management)

5:00-6:00         BREAK

Question 2

What are appropriate study designs (including potential for linking existing data-gathering infrastructures vs. starting de novo) to address the identified data needs?

6:00-9:00

Evening Session (with working dinner): Participants will divide into small working groups to address the above question from each of three perspectives:

  1. Out of hospital surveillance,
  2. Hospital surveillance, and
  3. Assessment of quality of care and outcomes.

6:00 pm         Small groups meet separately to prepare responses to Question 2

9:00 pm         Adjourn Day 1

Back to Top

Day 2

8:00 am         Housekeeping/announcements

8:15-11:20

Morning Session: The 3 small groups from Day 1 Evening Session will present their responses to Question 2, after which the full group will discuss and prepare its final recommendations.

Moderator: Dr. Luepker

8:15 am        Hospital Surveillance group presentation -- Dr. Roger

8:45 am        Out of Hospital Surveillance group presentation -- Dr. Ornato

9:15 am        Assessment of Quality of Care and Outcomes group presentation -- Dr. Goff

9:45 am        BREAK

10:00 am      Full group to consider small group responses to Question 2 and prepare final
                    recommendations

11:00 am      Wrap-up/Final announcements/Next steps?

11:20 am       Adjourn


Post-Adjournment Meeting

11:20 am-12:30 pm        Co-chairs, Day 2 Morning Session Moderator, Small Group Leaders, and
                                      NHLBI/ CDC representatives meet to address workshop report

Back to Top

Back to Executive Summary

Skip footer links and go to content
Twitter iconTwitterExternal link Disclaimer         Facebook iconFacebookimage of external link icon         YouTube iconYouTubeimage of external link icon         Google+ iconGoogle+image of external link icon