The North Carolina Acute Stroke Registry

1
The North Carolina Acute Stroke Registry A Story
of Collaboration E.Puckett, W.Rosamond,
S.Huston, T.Brown
2
CDC Issues Request for Applications in 2001

• The RFA for development of a Paul Coverdell Acute
  Stroke Registry prototype generated great
  interest in NC
• A number of Academic Medical Centers were
  interested in applying
• The State HDSP program convened a series of
  conference calls to discuss strategy

3
NC HDSP Program Convenes Stakeholders

• Participants on the calls included
• Representatives of academic centers as well as
  non-academic hospitals
• Members of the NC Heart Disease and Stroke
  Prevention Task Force
• NC members of the Tri-State Stroke Network

4
Coming to Consensus

• After discussions, the group decided
• NC was well positioned to compete for prototype
  funding
• Our position would be stronger with a single
  collaborative proposal rather than multiple
  competing proposals
• To reduce competitive pressures, lead should be
  Dr. Wayne Rosamond of the UNC-Chapel Hill School
  of Public Health

5
NC Prototype Funded in 2002

• Goals for Prototype
• Design and pilot test a real-time data collection
  and analysis system to measure delivery of care
  to patients with acute stroke
• Implement a feed-back mechanism to participating
  hospitals to facilitate quality improvement
  efforts

6
Specific Aims of NC Stroke Registry Prototype

• Identify and enroll acute stroke cases in 11
  hospitals of varying size, type and location
  across NC
• Record information related to symptom onset,
  diagnostic evaluation, acute treatments,
  discharge status and plan
• Develop mechanism for timely transmission of
  registry data elements
• Conduct process evaluation
• Write a development plan for statewide registry

7
Key Features of NC Collaborative Stroke Registry
? Located in stroke belt buckle
8
Key Features, continued
? Collaborative approach
9
Registry Sites
? Variety in hospital type and size
Hospital Beds Strokes/yr Stroke
Mortality Carolinas Medical Center 777
912 71.4 (52) Catawba Memorial 200
305 72.5 (44) Columbus County
Hospital 166 254 76.3 (33) Duke
University Hospital 954 705 68.6
(60) NC Baptist Hospital 698 869
72.0 (49) New Hanover Regional 506 1074
72.3 (44) Pitt County Memorial 604 988
85.3 (21) UNC Hospital 587 557
64.9 (74) Mission St. Josephs 707 1130
69.3 (57) Northeast Medical Center 322
568 54.8 (93) Valdese Hospital 176
86 73.6 (37) Age adjusted county
rate per 100,000 (rank in NC 1highest, 100
lowest) 1999-2001.
10
Key Features, continued...
? Prospective Data Collection
11
Key Features, continued.
? Real time data reporting
12
Results from Prototype

• 2620 patients enrolled between 12/02 10/03
• 60 identified in ED
• Onset time obtained from patient in 54 of cases,
  informant in 46
• Onset time missing from 1/3 of medical records -
  underscoring importance of prospective data
  collection

13
Conclusions from Prototype

• A prospective, emergency department-based
  registry of acute stroke patients is feasible
• Collaborative approach allowed input from and
  testing in a wide variety of environments
• Prospective method results in higher capture of
  symptom onset time compared to chart review
• Rapid data feedback made available to hospitals
  may facilitate quality improvement efforts for
  acute stroke

14
2004 Funding for Implementation

• 33 State HDSP Programs eligible to apply
• NC - same collaborative approach, same writing
  team, State HDSP lead
• NC proposal built on relationships developed
  around and lessons learned from prototype
  experience

15
Implementation Funding Awarded !

• State Stroke Registry Coordinator position
• Contract with UNC-Chapel Hill Dept of
  Epidemiology
• more focused and streamlined data collection
• data elements consistent with CDC requirements
• expanded sites (25 in Year 1)
• revised and enhanced web site

16
NC HDSP Funding Growth
17
Lessons Learned

• Establishment of the NC Heart Disease Stroke
  Prevention Task Force in 1995 led to
• CDC awarding NC comprehensive CVH funding in 1998
• Convening of Tri-State Stroke Summit in 1999
• Publication of Unexplained Stroke Disparity
  report in 2000
• Supplemental CDC funding for Tri-State Stroke
  Network in 2000
• NC Collaborative Stroke Registry prototype

18
More Lessons

• Relationships developed, resources garnered,
  capacity developed and lessons learned led to
• Collaboration not competition for prototype
  funding proposal
• Successful prototype developed and tested
• Successful proposal for implementation