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Annual Report Congenital Heart Surgeons Society Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M. DeCampli, M.D., Ph.D October 19, 2014

Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

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Page 1: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Annual ReportCongenital Heart Surgeons SocietyCongenital Heart Surgeons Society

Data Center

William G. Williams, M.D., FRCSC

William M. DeCampli, M.D., Ph.D

October 19, 2014

Page 2: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Personnel: FacultyPersonnel:  Faculty

• Bill Williams Executive DirectorBill Williams, Executive Director

• Bill DeCampli, Managing Director

• Brian McCrindle• Brian McCrindle

• Gene Blackstone

• Ed Hickey• Ed Hickey

• Luc Mertens

Page 3: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Personnel: StaffPersonnel:  Staff

• Sally Cai (Database Manager)• Sally Cai (Database Manager)

• Annette Flynn (Research Project Assistant)

• Susan McIntyre (Research Nurse Coordinator)• Susan McIntyre (Research Nurse Coordinator)

• Ilina Ristevska (Research Project Assistant)

V Si j (R h N C di t )• Veena Sivarajan (Research Nurse Coordinator)

Page 4: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Kirklin/Ashburn FellowshipKirklin/Ashburn Fellowship

• 6th and current fellow: Travis Wilder6 and current fellow:  Travis Wilder

• Funding:  salary: CHSS; tuition for advanced degree from UT: Div CT Surgery HSCdegree from UT: Div CT Surgery, HSC

• 7th fellow (2015‐6)– Selection committee:  DC faculty + Chairman of Research Committee

– 11 candidates:  4 referred by CHSS members

Page 5: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

James M. Meza, M.D.,

• PGY3 Surgery Resident at Duke

• Cardiothoracic Surgery track

• Also pursuing Masters of Health Science inAlso pursuing Masters of Health Science in Clinical Research at Duke

• BS Princeton MD University of Michigan• BS Princeton, MD University of Michigan

• Referred by Jake Jaquiss

Page 6: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Cohorts (as of 10/1/2014)

Page 7: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Total Number of Patients in CHSSTotal Number of Patients in CHSS Cohorts

890 903

629743

7008009001000

470 448566

421328 346

300400500600Number 

of Patients

145

0100200300

Cohort

Page 8: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Active Enrollment CohortsActive Enrollment Cohorts

• Proposed new cohort:  Ebstein’s anomaly– Dearani, Knott‐Craig, Pizarro

Page 9: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

305350

Annual Enrollment

195227

305

213250

300

145

181146 153

116

172 184 195

150

200Numberof

Patients

26 1952

50

100

0

Y f E ll tYear of Enrollment 

Page 10: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

2932 31

30

35Number of Enrolling 

Institutions

1820 19 18 18

22

20

25

30

Number

Institutions

11 1215 15

18 19 18

13

18

15

20Numberof 

Institutions

5

10

0

Year of Enrollment

Page 11: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Percentage enrollment 2013Percentage enrollment 2013

Active Cohort # eligible (STS) # enrolled (DC) Percentage enrolled

AAOCA 100 62 62%

LVOTO 709 85 12

Tricuspid atresia 208 18 8.7

Unbalanced AVSD 776 81 10.4

Page 12: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M
Page 13: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Follow upFollow up

Page 14: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

TA 2013 Follow upTA 2013 Follow‐up32 Institutions

90%

100%

50

60

FPa

60%

70%

80%

40

50 oll

ti

30%

40%

50%

20

30ow

ent

0%

10%

20%

0

10

*

‐up

s

4 5 9 10 12 15 18 21 23 24 26 35 46 51*p

Institution Code

TA # of Patients TA % Follow‐up*Comprised of 19 institutions contributing 5 or less patients

Page 15: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Follow up performanceFollow up performance

Cohort Cumulati Enrolled  Cumulative  Eligible  Could not  Percentage ve Enrollment to 9/2/2014

in 2014 deaths through2013 f/u

for 2014 follow up

contact, or refused follow up

successful follow up

9/2/2014

AAOCA 342 60 9 273 110 60%

LVOTO 737 39 225 473 171 64

T i id 313 26 36 251 79 67Tricuspidatresia

313 26 36 251 79 67

UnbalancedAVSD

149 64 4 81 27 67AVSD

Page 16: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Grants Studies and PublicationsGrants, Studies and Publications

Page 17: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Active StudiesActive Studies

• Unbalanced AVSDUnbalanced AVSD 

• FHS in PA/IVS

S i i i l S• FHS in critical AS

• LVOTO – Single versus 2V survival

– Longitudinal VF, AVVF

– Hybrid vs. Norwood vs. Sano

• AAOCA BMIAAOCA BMI

Page 18: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

GrantsGrants

• Michael H Ludwig Memorial FoundationMichael H. Ludwig Memorial Foundation

• Children’s Heart Foundation

S i i S i• Saving Tiny Hearts Society

• Nonin, Inc.

• Cryolife, Inc.

Page 19: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Grant applicationsGrant applications

• D O D (Gruber)– submitted 10/17D.O.D (Gruber) submitted 10/17

• Le Ducq (Gruber)– multinational;  genetic basis of CHD correlation with outcomesbasis of CHD, correlation with outcomes– Due 12/1 pending initial approval

Page 20: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Papers published/submittedPapers published/submitted

• Anomalous aortic origin of a coronary artery:  A report from g f y y p fthe CHSS Registry.  Poynter et al. WJPCHS 2014;5(1): 22‐30

• Repair of anomalous aortic origin of a coronary artery in 113 ti t A CHSS R t P t t l WJPCHS ipatients: A CHSS Report.  Poynter et al. WJPCHS in press

• Surgical management of competing pulmonary blood flow affects survival before Fontan/Kreutzer completion in patients ff f / p pwith tricuspid atresia type 1.  Wilder et al. EJCTS submitted

• Anomalous aortic origin of coronaries arteries in the young:  h di hi l i d i l l i Aechocardiographic evaluation and surgical correlation;  A 

multicenter CHSS study.  Lorber et al.  JACC Imaging to be submitted.

Page 21: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

PresentationsPresentations

• Hybrid alternatives to Norwood stage 1 are not a lower risk alternative:  d ff b bl ldNorwood‐RVPA offers better outcome in comparable neonates. Wilder et 

al.  To be presented at 2014 Scientific Sessions, AHA, November.• “Hybrid type” alternatives to Norwood may not be the lowest‐risk solution 

for HLHS Wilder et al Presented last night herefor HLHS.  Wilder et al.  Presented last night here.• Multiphase mixed model regression increases the utility of longitudinal 

data analysis in congenital heart surgery.  Wilder et al.  Presented at WSPCHS meeting, Sept 2014g, p

• Initial management of pulmonary blood flow is associated with late outcomes in tricuspid atresia.  Wilder et al. Presented at the EACTS meeting, Oct 2014

• Initial management of competing pulmonary blood flow affects survival in children with tricuspid atresia. Wilder et al.  To be presented at the Annual Meeting of the CCS, Oct 26‐27, Vancouver

Page 22: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Travis Wilder, MDKirklin/Ashburn Fellow

• For his “hybrid alternatives to Norwood” abstract, is the winner of the AHA Council on CVDY “Outstanding Research Award in Pediatric Cardiology” to be presented at the AHA Scientific Sessions 2014, Chicago, Nov 15‐19.

Page 23: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

Abstracts submittedAbstracts submitted

• Trends in right ventricular dysfunction and tricuspid g y f pregurgitation after single ventricle palliation of hypoplasticleft heart syndrome and their differential impact on survival.  Wilder et al Submitted for presentation at the AnnualWilder et al.  Submitted for presentation at the Annual Meeting ACC, February 2015.

• Late survival and right ventricular performance in matched children:  classic Norwood‐BT shunt versus Norwood‐Sano modification.  Wilder et al.  Submitted for presentation at the Annual Meeting AATS May 2015Annual Meeting AATS, May 2015.

Page 24: Annual Report Congenital Heart Surgeons Society Part I Annual Report.pdf · Annual Report Congenital Heart Surgeons Society Data Center William G. Williams, M.D., FRCSC William M

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