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
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TABLE OF CONTENTS
Workshop Objectives:
- 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.
- 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.
- To suggest possible study designs, including potential opportunities for using and linking existing data sources.
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Day 1
8:30 am Welcome, introduction,
charge to group
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Question 1:
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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?
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8:45-11:00
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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
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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
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11:00-12:15
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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 |
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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
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1:30-5:00
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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
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1:30 pm Health care delivery systems and/or
databases
* Department of Veterans Affairs -- Dr. Jesse
* HMOs -- Dr. Selby
* Academic centers -- Dr. Roger
2:15 pm Other Surveillance Systems/Registries:
* National EMS --Dr. Mears
* State-wide surveillance -- Dr. Sanchez
* Privately funded -- Dr. Peterson
* European systems -- Dr. Salomaa
3:15 pm BREAK
3:30 pm Studies assessing clinical management
patterns and/or patient outcome for:
* Acute Coronary Syndromes -- Dr. Goldberg
* Sudden Cardiac Arrest -- Dr. Morrison
* Heart Failure -- Dr. Krumholz
4:15 pm Other operational issues to be
considered
* Recruitment/data collection -- Dr. Goldberg
- Obstacles to accessing in-and outpatient medical records
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HIPAA, consent, and confidentiality issues
- Events
adjudication
* Data management -- Dr. Rosamond
- Infrastructure/coordination
- Promoting use of data
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Ethical issues (e.g., informing patients of sub-optimal clinical
management)
5:00-6:00 BREAK
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Question 2
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What are appropriate study designs (including potential for linking existing data-gathering infrastructures vs. starting de novo) to address the identified data needs?
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6:00-9:00
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Evening Session (with working dinner): Participants will divide into small working groups to address the above question from each of three perspectives:
- Out of hospital surveillance,
- Hospital surveillance, and
- Assessment of quality of care and outcomes.
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6:00 pm Small groups meet
separately to prepare responses to Question 2
9:00 pm Adjourn Day
1
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Day 2
8:00 am
Housekeeping/announcements
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8:15-11:20
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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
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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
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