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.

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

* 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
- 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: Out of hospital surveillance, Hospital surveillance, and 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

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

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