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: 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
Protocol Title: Single Ventricle Reconstruction Study Extension
Principal Investigator: Pediatric Heart Network Multi-Center Study
Protocol Title: Fontan Follow-Up Study Basics
Protocol Title: Fontan Follow-Up Study Basics
Principal Investigator: Mark C Wesley, MD
Protocol Title: Pharmacokinetics of Tranexamic Acid (TXA) in Children Undergoing Repair of Congenital Heart Defects Utilizing Cardiopulmonary Bypass
Protocol Title: Pharmacokinetics of Tranexamic Acid (TXA) in Children Undergoing Repair of Congenital Heart Defects Utilizing Cardiopulmonary Bypass
Principal Investigator: Michael Agus, MD
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery
Principal Investigator: John M Costello, MD MPH
Protocol Title: Effects of Perioperative Nesiritide or Milrinone Infusion on Recovery From Fontan Surgery
Protocol Title: Effects of Perioperative Nesiritide or Milrinone Infusion on Recovery From Fontan Surgery
The Children’s Hospital of Philadelphia
Principal Investigator: Jack Rychik, MD
Protocol Title: Sildenafil After the Fontan Operation (SAFO)
Principal Investigator: Robert E Shaddy, MD
Protocol Title: Evaluation of Panel Reactive Antibody in Children Following Stage I Palliation for Hypoplastic Left Heart Syndrome
Protocol Title: Evaluation of Panel Reactive Antibody in Children Following Stage I Palliation for Hypoplastic Left Heart Syndrome
Principal Investigator: Felice Su, MD
Protocol Title: Understanding Dexmedetomidine in Neonates After Open Heart Surgery
Protocol Title: Understanding Dexmedetomidine in Neonates After Open Heart Surgery
U-M C.S. Mott Children’s Hospital
Principal Investigator: John Charpie, MD, PhD
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery
Protocol Title: SPECS: Safe Pediatric Euglycemia in Cardiac Surgery
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
Protocol Title: Trial of Vasopressin and Epinephrine to Epinephrine Only for In-Hospital Pediatric Cardiopulmonary Resuscitation
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).
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
Protocol Title: SPY Imaging System: It’s Role in Pediatric Cardiac Surgery
Principal Investigator: Shannon E Hamrick, MD
Protocol Title: Magnetic Resonance Imaging (MRI) to Evaluate Brain Injury in Congenital Heart Disease (CHD Brain)
Principal Investigator: Denver Sallee, MD
Protocol Title: Abnormal 3-D MRI Flow Patterns in Adolescents Patients with Bicuspid Aortic Valve
Protocol Title: Abnormal 3-D MRI Flow Patterns in Adolescents Patients with Bicuspid Aortic Valve
Children’s Hospital of Wisconsin
Principal Investigator: Steve Zangwill, MD
Protocol Title: Erythropoietin and Pediatric Cardiac Surgery (EPO)
Principal Investigator: Steve Zangwill, MD
Protocol Title: Erythropoietin and Pediatric Cardiac Surgery (EPO)
Principal Investigator: Rohit Rao, MD
Protocol Title: Multi-Site Near Infrared Spectroscopy (NIRS) Monitoring of Children During Exercise
Protocol Title: Multi-Site Near Infrared Spectroscopy (NIRS) Monitoring of Children During Exercise
Principal Investigator: Nancy Ghanayem, MD
Protocol Title: Near-Infrared Spectroscopy (NIRS) Neurodevelopmental Outcomes (NIRS ND)
Protocol Title: Near-Infrared Spectroscopy (NIRS) Neurodevelopmental Outcomes (NIRS ND)
Cincinnati Children’s Hospital Medical Center
Principal Investigator: Katherine Krawczeski, MD
Protocol Title: Intravenous L-Citrulline to Treat Children Undergoing Heart Bypass Surgery
Protocol Title: Intravenous L-Citrulline to Treat Children Undergoing Heart Bypass Surgery
Nationwide Children’s Hospital
Principal Investigator: Vidu Garg, MD
Protocol Title: Genetics of Congenital Heart Disease
Principal Investigator: Aymen N Naguib, MD
Protocol Title: Measures to Lower the Stress Response in Pediatric Cardiac Surgery
Protocol Title: Measures to Lower the Stress Response in Pediatric Cardiac Surgery