Current Research Studies of the Top Ten Best Children’s Heart Hospitals

As a parent of a child with HLHS, I often think about what concerns other heart parents have about their children. Although our children have a common diagnosis, they are very different developmentally, physically, socially, and emotionally. A general internet search of Hypoplastic Left Heart Syndrome leads us to basic information on the diagnosis, heart anatomy, surgeries and transplant and very little else, but leaves us with many questions. How does a child develop HLHS? Can HLHS be prevented? What does this mean to a child with HLHS? What does this mean to a family of HLHS?  How best to share our information with one another? How can we help the doctors put the pieces together of this puzzling heart defect? One goal of mine is to find ways to expand on the current published knowledge parents can access regarding HLHS. I also strongly encourage parents to participate in research studies involving our special kids. This is the key to answering the many questions we have about HLHS.  In the meanwhile, I would like to share with you some of the current research studies the Top Ten Children’s Heart Hospitals are currently working on to better care for our children.

Children’s Hospital Boston

Principal Investigator: Jane Newburger, MD
Protocol Title: Brain Structure and Function in Adolescents after the Fontan Operation
http://www.childrenshospital.org/research/clinical/TrialDescr.cfm?id=236

Principal Investigator: Pediatric Heart Network Multi-Center Study
Protocol Title: Single Ventricle Reconstruction Study Extension

http://www.pediatricheartnetwork.com/svrextensionforparents.asp

Principal Investigator: Pediatric Heart Network Multi-Center Study   
Protocol Title:  Fontan Follow-Up Study Basics

http://www.pediatricheartnetwork.com/fontan2forparents.asp

Principal Investigator:  Mark C Wesley, MD   
Protocol Title:  Pharmacokinetics of Tranexamic Acid (TXA) in Children Undergoing Repair of Congenital Heart Defects Utilizing Cardiopulmonary Bypass

http://www.clinicaltrials.gov/ct2/show/NCT01045356?term=Congenital+heart+defect&recr=Open&rank=6

Principal Investigator: Michael Agus, MD  
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery 

http://www.clinicaltrials.gov/ct2/show/NCT00443599?term=Congenital+heart+defect&recr=Open&rank=22

Principal Investigator: John M Costello, MD MPH
Protocol Title: Effects of Perioperative Nesiritide or Milrinone Infusion on Recovery From Fontan Surgery 

http://www.clinicaltrials.gov/ct2/show/NCT00543309?term=Congenital+heart+defect&recr=Open&rank=34

The Children’s Hospital of Philadelphia

Principal Investigator: Jack Rychik, MD
Protocol Title: Sildenafil After the Fontan Operation (SAFO) 

http://clinicaltrials.gov/ct2/show/NCT00507819

Principal Investigator: Robert E Shaddy, MD   
Protocol Title: Evaluation of Panel Reactive Antibody in Children Following Stage I Palliation for Hypoplastic Left Heart Syndrome

http://www.clinicaltrials.gov/ct2/show/NCT01135485?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3APA&age=0&rank=4

Principal Investigator: Felice Su, MD
Protocol Title:  Understanding Dexmedetomidine in Neonates After Open Heart Surgery

http://www.clinicaltrials.gov/ct2/show/NCT00576381?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3APA&age=0&rank=8

U-M C.S. Mott Children’s Hospital

Principal Investigator: John Charpie, MD, PhD    
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery

 http://www.clinicaltrials.gov/ct2/show/NCT00443599?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AMI&age=0&rank=1

Texas Children’s Hospital

Principal Investigator: Tia Tortoriello Raymond, M.D.   
Protocol Title: Trial of Vasopressin and Epinephrine to Epinephrine Only for In-Hospital Pediatric Cardiopulmonary Resuscitation

http://www.clinicaltrials.gov/ct2/show/NCT00628550?term=heart&recr=Open&state1=NA%3AUS%3ATX&age=0&rank=12

Lucile Packard Children’s Hospital

Principal Investigator: Stephen J Roth, MD, MPH  
Protocol Title: Aminophylline to Prevent Acute Kidney Injury in Children After Cardiac Surgery (KID PRO AM).

http://www.clinicaltrials.gov/ct2/show/NCT01245595?term=Congenital+heart+defect&recr=Open&rank=27  

Children’s Healthcare of Atlanta Pediatric Hospital

Principal Investigator:  Brian Kogon, MD
Protocol Title: SPY Imaging System: It’s Role in Pediatric Cardiac Surgery 

http://www.clinicaltrials.gov/ct2/show/NCT00446927?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AGA&age=0&rank=1

Principal Investigator: Shannon E Hamrick, MD      
Protocol Title: Magnetic Resonance Imaging (MRI) to Evaluate Brain Injury in Congenital Heart Disease (CHD Brain) 

http://www.clinicaltrials.gov/ct2/show/NCT00932633?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AGA&age=0&rank=4

Principal Investigator: Denver Sallee, MD  
Protocol Title: Abnormal 3-D MRI Flow Patterns in Adolescents Patients with Bicuspid Aortic Valve

http://www.clinicaltrials.gov/ct2/show/NCT00412386?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AGA&age=0&rank=6

Children’s Hospital of Wisconsin

Principal Investigator: Steve Zangwill, MD      
Protocol Title: Erythropoietin and Pediatric Cardiac Surgery (EPO) 

http://www.clinicaltrials.gov/ct2/show/NCT00451698?cond=congenital+heart+defect&state1=NA%3AUS%3AWI&age=0&rank=1

Principal Investigator:  Rohit Rao, MD  
Protocol Title: Multi-Site Near Infrared Spectroscopy (NIRS) Monitoring of Children During Exercise 

http://www.clinicaltrials.gov/ct2/show/NCT00556231?cond=congenital+heart+defect&state1=NA%3AUS%3AWI&age=0&rank=2

Principal Investigator: Nancy Ghanayem, MD  
Protocol Title:  Near-Infrared Spectroscopy (NIRS) Neurodevelopmental Outcomes (NIRS ND)

http://www.clinicaltrials.gov/ct2/show/NCT00464100?cond=congenital+heart+defect&state1=NA%3AUS%3AWI&age=0&rank=5

Cincinnati Children’s Hospital Medical Center

Principal Investigator: Katherine Krawczeski, MD     
Protocol Title: Intravenous L-Citrulline to Treat Children Undergoing Heart Bypass Surgery 

http://www.clinicaltrials.gov/ct2/show/NCT01120964?term=citrulline&recr=Open&state1=NA%3AUS%3AOH&age=0&rank=1

Nationwide Children’s Hospital

Principal Investigator: Vidu Garg, MD
Protocol Title:  Genetics of Congenital Heart Disease

http://www.clinicaltrials.gov/ct2/show/NCT01192048?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AOH&age=0&rank=1

Principal Investigator: Aymen N Naguib, MD           
Protocol Title:  Measures to Lower the Stress Response in Pediatric Cardiac Surgery

http://www.clinicaltrials.gov/ct2/show/NCT00848393?recr=Open&cond=congenital+heart+defect&state1=NA%3AUS%3AOH&age=0&rank=2