Outcomes for children and adults with congenital heart disease (CHD) have greatly improved over the past few decades thanks to scientific and clinical advancements in the field. However, collecting data on clinical outcomes has been spotty and is most often siloed across organizations, expertise and data fields.
Cardiac Networks United is a new integrated research and improvement network created to align and integrate data, expertise and resources to support research and improve outcomes for CHD patients and their families. David Brown, MD, director of the Fellowship Training Program, Department of Cardiology at Boston Children’s Hospital and a member of Cardiac Networks United, sees networks like this as the wave of the future in pediatric cardiac care.
Advancing the field by sharing experiences
“In our field, there’s been an incredible birth of learning networks, patient registries and population- and disease-specific interest groups who are dedicated to collaboratively advancing the care of patients through cooperation across centers,” says Brown. “The idea is to share our experiences, learn from others, and advance the field as a whole for the greater good of our highly complex, heterogenous pediatric cardiac population.”
Brown says a group of like-minded people from several research and quality improvement networks came together in 2017 to create Cardiac Networks United for the purposes of addressing current barriers and creating a new culture of collaborative science. The network is currently a consortium of five networks, each created with a specific focus area, that have pledged to collaborate and share data and expertise, including:
- ACTION Heart Failure Network: focused on heart failure/ventricular assist devices
- Cardiac Neurodevelopmental Outcomes Collaborative (CNOC): focused on neurodevelopmental outcomes
- National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC): focused on single ventricle patients
- Pediatric Acute Care Cardiology Collaborative (PAC3): focused on cardiac acute care
- Pediatric Cardiac Critical Care Consortium (PC4): focused on cardiac critical care
Together, these networks include more than 65 pediatric and congenital heart programs that span the U.S. and Canada.
Streamlining the data collection process
“We realized that each of these networks is grappling with the same issues, and Cardiac Networks United was necessary to help registries learn from each other and streamline the process of participation,” says Brown. Specific goals include learning how to improve quality, how to lessen the data information load problem, how to structure the data and decide where it lives and who has access, and how manage the process in a way that is cost-effective for centers. Brown says it’s critically important to streamline the process so cardiac centers can participate without hiring an army of data entry people.
“Quality improvement registries need to be able to communicate with each other, or they won’t be sustainable,” says Brown. “Our vision down road is to create one shared master registry. Different interest groups could extract data that they want for their specific patient groups without duplicating efforts between these different registries.”
Looking ahead, the group is scheduling a dedicated Cardiac Networks United meeting following the NPC-QIC fall learning session, leveraging on the attendance of NPC-QIC, with fall meetings of PAC3 and PC4 to follow that.
David Brown, MD, director of the Fellowship Training Program, Department of Cardiology at Boston Children’s Hospital and a member of Cardiac Networks United, sees networks like this as the wave of the future in pediatric cardiac care.”
A sample of recently-published research by Heart Center faculty
Alsaied T, Sleeper LA, Masci M, Ghelani SJ, Azcue N, Geva T, Powell AJ, Rathod RH. Maldistribution of Pulmonary Blood Flow in Patients After the Fontan Operation Is Associated With Worse Exercise Capacity. J Cardiovasc Magn Reson. 2018; 20(1): 85.
Alshawabkeh L, Rajpal S, Landzberg MJ, Emani S, Ephrem G, Gray C, Singh MN, Wu F, Opotowsky AR. Relationship of Red Cell Distribution Width to Adverse Outcomes in Adults With Congenital Heart Disease (From The Boston Adult Congenital Heart Biobank). Am J Cardiol. 2018.
Andersen ND, Borisuk MJ, Hoganson DM, Rathod RH, Baird CW. Three-Patch Aortic Root Reconstruction With Extended Left Main Coronary Artery Patch Augmentation in Neonates and Infants. Semin Thorac Cardiovasc Surg. 2018.
Barry OM, Friedman KG, Bergersen L, Emani S, Moeyersoms A, Tworetzky W, Marshall AC, Lock JE. Clinical and Hemodynamic Results After Conversion From Single to Biventricular Circulation After Fetal Aortic Stenosis Intervention. Am J Cardiol. 2018; 122(3): 511-516.
Barry OM, Gauvreau K, Rhodes J, Reichman JR, Bourette L, Curran T, O’Neill J, Pymm JL, Alexander ME. Incidence and Predictors of Clinically Important and Dangerous Arrhythmias During Exercise Tests in Pediatric and Congenital Heart Disease Patients. JACC Clin Electrophysiol. 2018; 4(10):1319-1327.
De Ferranti SD, Gauvreau K, Friedman KG, Tang A, Baker AL, Fulton DR, Tremoulet AH, Burns JC, Newburger JW. Association of Initially Normal Coronary Arteries With Normal Findings on Follow-Up Echocardiography in Patients With Kawasaki Disease. JAMA Pediatr. 2018. e183310.
Desai NK, Mendelson MM, Baker A, Ryan HH, Griggs S, Boghani M, Yellen E,Buckley L, Gillman MW, Zachariah JP, Graham D, Jonas MM, de Ferranti, SD. Hepatotoxicity of Statins as Determined By Serum Alanine Aminotransferase in a Pediatric Cohort With Dyslipidemia. J Pediatr Gastroenterol Nutr.
Emani S, Sleeper LA, Faraoni D, Mulone M, Diallo F, DiNardo JA, Ibla, J, Emani SM. Thromboelastography Is Associated With Surrogates For Bleeding After Pediatric Cardiac Operations. Ann Thorac Surg. 2018; 106(3): 799-806.
Gellis L, Gauvreau K, Ferguson M, Bergersen L, Shafer K, Porras D. Contrast Volume to Estimated Glomerular Filtration Rate Ratio for Prediction of Contrast-Induced Acute Kidney Injury After Cardiac Catheterization in Adults With Congenital Heart Disease. Catheter Cardiovasc Interv. 2018.
Guo Y, Jardin BD, Zhou P, Sethi I, Akerberg BN, Toepfer CN, Ai Y, Li Y, Ma Q, Guatimosim S, Hu Y, Varuzhanyan G, VanDusen NJ, Zhang D, Chan DC, Yuan GC, Seidman CE, Seidman JG, Pu WT. Hierarchical and Stage-Specific Regulation of Murine Cardiomyocyte Maturation by Serum Response Factor. Nat Commun. 2018; 9(1): 3837.
Hickey PA, Gauvreau K, Porter C, Connor JA. The Impact of Critical Care Nursing Certification on Pediatric Patient Outcomes. Pediatr Crit Care Med. 2018; 19(8): 718-724.
Jolley MA, Hammer PE, Ghelani SJ, Adar A, Sleeper LA, Lacro RV, Marx GR, Nathan M, Harrild DM. Three-Dimensional Mitral Valve Morphology in Children and Young Adults With Marfan Syndrome. J Am Soc Echocardiogr. 2018.
Mah DY, Prakash A, Porras D, Fynn-Thompson F, DeWitt ES, Banka P. Coronary Artery Compression From Epicardial Leads: More Common Than We Think. Heart Rhythm. 2018.
Martins JD, Zachariah J, Selamet Tierney ES, Truong U, Morris SA, Kutty S, de Ferranti SD, Rhodes J, Antonio M, Guarino M, Thomas B, Oliveira D, Gauvreau K, Jalles N, Geva T, Carmo M, Prakash A. Rationale and Design of Long-Term Outcomes and Vascular Evaluation After Successful Coarctation of the Aorta Treatment Study. Ann Pediatr Cardiol. 2018; 11(3): 282-296.
Mills KI, van den Bosch SJ, Gauvreau K, Allan CK, Thiagarajan RR, Hoganson DM, Baird CW, Nathan M, DiNardo JA, Kheir JN. Physiologic Effects of Delayed Sternal Closure Following Stage 1 Palliation. Cardiol Young. 2018; 1-11.
O’Leary ET, Gauvreau K, Alexander ME, Banka P, Bezzerides VJ, Fynn-Thompson F, Triedman JK, Walsh EP, Mah DY. Dual-Site Ventricular Pacing in Patients With Fontan Physiology and Heart Block: Does it Mitigate the Detrimental Effects of Single-Site Ventricular Pacing? JACC Clin Electrophysiol. 2018; 4(10): 1289-1297.
Peng YF, Kheir JN, Polizzotti BD. Injectable Oxygen: Interfacing Materials Chemistry With Resuscitative Science. Chemistry-a European Journal. 2018; 24(71): 18820-18829.
Pickard SS, Gauvreau K, Gurvitz M, Gagne JJ, Opotowsky AR, Jenkins KJ, Prakash A. A National Population-Based Study of Adults With Coronary Artery Disease and Coarctation of the Aorta. Am J Cardiol. 2018.
Quinn BP, Armstrong AK, Bauser-Heaton HD, Callahan R, El-Said HG, Foerster SR, Goldstein BH, Goodman AS, Gudausky TM, Kreutzer JN, Leahy RA, Petit CJ, Rockefeller TA, Shahanavaz S, Trucco SM, Bergersen L. Radiation Risk Categories in Cardiac Catheterization for Congenital Heart Disease: A Tool to Aid in the Evaluation of Radiation Outcomes. Pediatr Cardiol. 2018.
Roberts EG, Piekarski BL, Huang K, Emani S, Wong JP, Emani SM. Evaluation Of Placental Mesenchymal Stem Cell Sheets For Myocardial Repair And Regeneration. Tissue Eng Part A. 2018.
Robson VK, Stopp C, Wypij D, Dunbar-Masterson C, Bellinger DC, DeMaso DR, Rappaport LA, Newburger JW. Longitudinal Associations Between Neurodevelopment and Psychosocial Health Status in Patients With Repaired D-Transposition of the Great Arteries. J Pediatr. 2018.
Shafer KM, Opotowsky AR, Rhodes J. Exercise Testing And Spirometry As Predictors Of Mortality In Congenital Heart Disease: Contrasting Fontan Physiology With Repaired Tetralogy Of Fallot. Congenit Heart Dis. 2018.
Shakti D, Friedman KG, Harrild DM, Gauvreau K, Geva T, Colan SD, Brown DW. Left Atrial Size and Function in Patients With Congenital Aortic Valve Stenosis. Am J Cardiol. 2018.
Walsh EP. Ebstein’s Anomaly of the Tricuspid Valve: A Natural Laboratory for Re-Entrant Tachycardias. JACC Clin Electrophysiol. 2018; 4(10): 1271-1288.
Zaidi AH, Newburger JW, Wypij D, Stopp C, Watson CG, Friedman KG, Rivkin MJ, Rollins CK. Ascending Aorta Size at Birth Predicts White Matter Microstructure in Adolescents Who Underwent Fontan Palliation. J Am Heart Assoc. 2018’; 7(24): e010395.