Download Pedimacs Report – B. Blume - University of Alabama at Birmingham

Annual Fall Meeting
November 13, 2016
6:30pm
Welcome
J. Kirklin/M. Everitt
6:40pm
Steering Committee Report
M. Everitt
6:50pm
DCC Update
J. Kirklin/D. Naftel
7:05pm
Web Based Data Entry
D. Naftel
7:20pm
Database Committee Report
M. Richmond
7:35pm
Foundation Update
C. Collum/B. Wilk/R. Gajarski
7:50pm
Risk Factor Model
K. Schumacher
8:05pm
Heart Failure Simulation
B. Feingold
8:10pm
iPHFR
R. Gajarski
8:15pm
Break
8:30pm
Pedimacs Report
B. Blume
8:40pm
Scientific Committee Report
D. Hsu
8:50pm
Scientific Committee Sponsored
Workshops
D. Hsu
9:35pm
New Business
M. Everitt
Data entry completion
100.0%
90.0%
80.0%
70.0%
60.0%
50.0%
Series1
40.0%
30.0%
20.0%
10.0%
0.0%
1 Week Post- 1 Month PostImplant
Implant
3 Month
Follow-Up
6 Month
Follow-Up
1 Year FollowUp
1.5 Year
Follow-Up
2 Year FollowUp
2.5 Year
Follow-Up
3 Year FollowUp
Published Manuscripts
• Outcomes of children implanted with ventricular assist devices in the
United States: First analysis of the Pediatric Interagency Registry for
Mechanical Circulatory Support (Pedimacs)
• Blume, Elizabeth D. et al. The Journal of Heart and Lung Transplantation
•
• Adverse Events in Children Implanted with Ventricular Assist Devices in the
US: Data from the Pediatric Interagency Registry for Mechanical
Circulatory Support (Pedimacs)
• Rosenthal, D.N. et al. The Journal of Heart and Lung Transplantation
•
• Outcomes of pediatric patients supported with continuous-flow
ventricular assist devices: A report from the Pediatric Interagency Registry
for Mechanical Circulatory Support (Pedimacs)
• Rossano, Joseph W. et al. The Journal of Heart and Lung Transplantation
Projects in process
•
Infectious Complications of Ventricular Assist Device use in Children in the US: Data from the
Pediatric Interagency Registry for Mechanical Circulatory Support S. Auerbach Research
Status: ISHLT 2015. Finalizing manuscript
•
Temporary Circulatory Support in Children in the US: Data from the Pediatric Interagency
Registry for Mechanical Circulatory Support A. Lorts Research Status: ISHLT 2015
manuscript in draft
•
Utilization and Outcomes of Ventricular Assist Device Support in Adult Congenital Heart
Disease: An analysis of the Intermacs C. Vanderpluym Research Status: ISHLT 2015
Manuscript submitted to JHLT
•
Pedimacs and PHIS databases to evaluate: Resource Utilization in Pediatric Patients
Supported with Ventricular Assist Devices J. Rossano Research Status: Linkage in process at
CHOP
•
Changes in Renal Function Following Left Ventricular Assist Device Placement in Pediatric
Patients J. Friedland-Little Research Status: Accepted AHA 2016
•
•
•
Outcomes of infections in children and young adults with ventricular assist devices S. Chen
Research Status: Submitted ISHLT
PHTS-Pedimacs linkage: Sutcliffe, Research Status: Submitted ISHLT
2017 project directions
•
•
•
•
•
Single ventricle/ CHD
Neuro AE
PHIS $$
Rehospitalizations/discharge
Quality of life
28 institutions have participated in
writing groups
Lurie Children’s Hospital of Chicago
Barnes-Jewish Hospital/St.Louis Children's
Children's Healthcare of Atlanta
Children's Hospital Boston
Children's Hospital of Colorado
Children's Hospital of Wisconsin
Children's Medical Center, Dallas Texas
Cincinnati Children's Hospital Medical Center
Columbia Presbyterian Children's Hospital of NY
Duke University
Lucile Packard Children's Hospital
Medical University of South Carolina
Methodist Hospital Indiana
Nemours/A.I. duPont Hospital for Children
58 individual investigators
NHLBI
Seattle Children's Hospital
Shands at the University of Florida
Stanford University Medical Center
Stollery Children's Hospital, Canada
Texas Children's Hospital
The Childrens Hospital, Denver
The Children's Hospital of Philadelphia
UCLA
University of Alabama at Birmingham
University of Colorado Hospital
University of Michigan
University of Nebraska Children's Hospital
University of Pittsburgh
Washington University School of Medicine
How to Get Pedimacs Reports and Data
•
•
Pedimacs reports are easily accessible online as a part of the Intermacs statistical reporting
Public Statistical Report – http://intermacs.org/reports/public-statistical-report
Biannually, an updated Pedimacs Statistical Report is released including overall cohort patient
and implant characteristics and outcomes such as survival estimates and competing outcomes
• Quality Assurance Site Report – http://intermacs.org/reports/quarterly-site-reports
Site administrators can download a site specific comparison report comparing patient and
implant characteristics and outcomes at their site with the overall Pedimacs cohort on a
biannual basis
• Data Quality Site Report – http://intermacs.org/reports/quarterly-site-reports
A snapshot of key data elements are provided to Site Administrators twice a year and are a part
of the Pedimacs auditing process
Coming Soon
• Research SAS Datasets – http://intermacs.org/reports/research-sas-datasets
Each quarter the many forms collected in Pedimacs are checked and combined into analytical
datasets suitable for research and analysis
• Instantaneous Downloadable Excel Spreadsheets, Web Based Cohort Comparisons, and User
Specified Outcome Analytics
Participation
•
•
•
•
•
•
Quality of Life Committee
Coordinator Council
Adjudication committee/ Adverse Events
Writing groups
International participation
Education Committee
Please join us for the Intermacs
11th Annual Meeting
March 3-4, 2017
Westin Peachtree Plaza
210 Peachtree Street NW
Atlanta, GA 30303