SCORE Affiliated Projects

SCORE is very active both inside and outside of our Congenital Heart Program:

• SCORE has representation on the planning committee for the upcoming Congenital Heart Program Research Symposium

• SCORE has had membership on the REB review board

• SCORE has developed resources to help empower patients and families in decision making and to address barriers to participation

• Members of SCORE have consulted on the development and moderation of the new Alberta SPOR Clinical Trails Certificate Program

• SCORE hosts a quarterly Coordination Meeting inviting all research coordinators (regardless of affiliation), who are active in the pediatric cardiac patient population, to participate in discussion on standardization of best practice

• SCORE has facilitated the development and population of an electronic software solution for the management and cataloging of our 3D Echo Media Inventory (EMI)

• SCORE has supported new trainee research orientation with annual didactic lectures at academic half day

SCORE has supported Health Canada Division 5 regulated and industry sponsored clinical trials:

• Dr. Nee Khoo, 2018, Physical activity promotion in children and adolescents with single ventricle physiology (MedBike Study)

• Dr. Andrew Mackie, 2018, PHN/NIH, FUEL OLE (Open Label Extension)

• Dr. Andrew Mackie, 2017, PHN/NIH, Fontan Udenafil Exercise Longitudinal Assessment Trial (FUEL)

• Dr. Jennifer Conway, 2017, Jarvik Heart Inc/NHLBI, Circulatory Support in Pediatric Heart Failure Patients Using the Jarvik 2015 VAD (pumpKIN Trial)

• Dr. Jennifer Conway, 2016, Jansen UNIVERSE Study

• Dr. Yashu Coe, 2014, Medtronic TPV PB1016 Surveillance Study

SCORE has offered sample size calculation, analysis plans, and statistical support services:

Dr. Edythe Tham

• • 2014, Survival of single ventricle patients undergoing Norwood procedure, Kaplan Meier Survival curve and survival rate

  • 2015, Myocardial tissue characteristics using T1 mapping in pediatric patients with cardiac disease, Sample size and analysis plan

Dr. Tim Colen

• • 2014, Subvalve and Valvar Pathology Predict Post-operative Valve failure after Primum ASD Repair, Analysis for abstract

  • 2014-2017, The tricuspid valve in hypoplastic left heart syndrome: leaflets adapt to interstage stressors by expansion, while regurgitation is associated with prolapse and excessive leaflet growth, Analysis for the study

Dr. Joseph Atallah

• 2014-2016, Correlation of electrocardiogram parameters and hemodynamic outcomes in patients with isolated secundum atrial septal defects, Published: Analysis for the study

• 2015, Riata Lead Project, Analysis for abstract

Dr. Jennifer Conway/Dr. Nee Khoo

• 2014, Advanced Echocardiography Features in Predicting First Interstage Survival in Hypoplastic Left Heart Syndrome, Sensitivity, specificity, PPV and NPV for abstract

Dr. Jennifer Conway

• 2014-2015, SUPPORTING PEDIATRIC PATIENTS WITH SHORT TERM CONTINUOUS FLOW DEVICES, Published: Analysis for the study

• 2015, Home Milrinone Therapy in Children: Impact on Quality of Life and Family Functioning, Sample size calculation and analysis plan

Dr. Gwen Rempel

• 2015, Family Resilience Study, Scoring, descriptive analysis, cluster analysis on different questionnaire

• 2015, APPROACH-IS study, Analysis for the study

Dr. Isabelle VonderMuhll

• 2015, Clinical Predictors of Recoarctation or Aneurysm Post Surgical Repair of Aortic Coarctation: towards refining the for MRI imaging, Analysis for abstract

Dr. Paul Kantor

• 2015-2016, Outcomes of pediatric heart failure related hospitalizations in Canada, 2005-2014, Analysis

Dr. Nee Khoo

• 2015, Physical activity promotion in children and adolescents with HLHS, Sample size calculation

SCORE has offered coordination services, regulatory support, feasability assessments, and audit prep:

• Carolina Escudero, S-ICD Chart Review, P-QOL Survey, SOLAR SVT Registry

• Konstantin Averin, Sleep Studies in Children with Fontan

• Nee Khoo, Echo Media Inventory (EMI)

• Tim Colen, Prospective quantitative Three Dimensional Assessment of Atrioventricular Valves in Congenital Heart Disease

• Paul Kantor, Development of a Risk Calculator to Predict Sudden Cardiac Death in Children with Hypertrophic Cardiomyopathy”

• Tim Colen and Edythe Tham, Longitudinal Hypoplastic Left Heart Study

• Billie Jean Martin, The Fontan operation: modern outcomes from a regionalized center

• Edythe Tham

  • Novel imaging techniques to determine the late effects of anthracycline toxicity on myocardial function in cancer survivors

  • Use of Novel Imaging Techniques To Assess The Effects of Iron Loading on Cardiac Function in Patients with Hemoglobinopathy

  • Quantification of Left-sided Atrioventricular Valve Regurgitation: A Comparison of Three- Dimensional Echocardiography to Cardiac MRI in Children with Congenital Heart Disease

  • A review of stress perfusion magnetic resonance Imaging

SCORE has supported financial management:

• • Dr. Yashu Coe, 2014, Medtronic TPV PB1016 Surveillance Study

  • Dr. Michal Kantoch, 2014, Hypertrophic Cardiomyopathy in children: Age specific risk stratification for sudden death

SCORE has travelled:

• 2014 and 2017, Houston TX, Circulatory Support in Pediatric Heart Failure Patients Using the Jarvik 2015 VAD (pumpKIN Trial)

• 2017, Philadelphia PA, Fontan Udenafil Exercise Longitudinal Assessment Trial (FUEL)

• 2016, Toronto, UNIVERSE Study

• 2014, Toronto, Medical Imaging Trial Network of Canada Trainee Mentorship Exchange

• 2014, San Francisco CA, International Conference Neonatal & Childhood Pulmonary Vascular Disease

SCORE has assisted in developing customized data collection tools/case report forms and data collection:

• • Dr. Jennifer Conway, Long term VAD outcomes study in association with PEDIMACS/INTERMACS

  • Dr. Paul Kantor, Risk stratification for SCD in HCM in collaboration with SickKids

  • Dr. Tim Colen and Dr. Nee Khoo, Echo Media Inventory