Patient Story from Pediatric Neurology Epilepsy Clinic

When Anthony was six months old we were referred to pediatric neurology for questionable diagnosis of cerebral palsy. One month later, Anthony began having seizures. We began seeing Shelly Flynn, ARNP, in the pediatric neurology epilepsy clinic, and Anthony was then diagnosed with infantile spasms. And so began our journey into this whole new world, new life in University of Iowa Stead Family Children’s Hospital.

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NICU Receives GOLD-level AACN Beacon Award for Excellence

Please congratulate the Nursing Leadership and Nursing Education Team with Emily Spellman leading the charge on winning a GOLD-level AACN Beacon Award for Excellence for our NICU from the American Association of Critical-Care Nurses (AACN) recognizing individual hospital units that improve patient outcomes.

The Beacon Award for Excellence lauds North American hospital units that employ evidence-based practices to improve patient and family outcomes and we are one of only nine NICU’s with a Gold Designation.

This is a major honor with fewer than 300 out of more than 6,000 intensive care units both adult and pediatric and both medical and surgical in the United States who have received this award.

This is a very significant national recognition of the quality of care provided by the nurses to our patients in the NICU and is highly deserved.

Ciliberto, Nester, Reinking, and Sharathkumar Receive Awards for New Clinical Trials

Drs. Ciliberto, Nester, Reinking, and Sharathkumar received clinical trials awards recently:

  • Dr. Ciliberto: “A Double-Blind, Randomized, Placebo-Controlled Study to Investigate the Efficacy and Safety of Cannabidiol (GWP42003-P, CBD) as Add-on Therapy in Patients with Tuberous Sclerosis Complex Who Experience Inadequately-Controlled Seizures”, Proteostasis Therapeutics, Inc. for $172,000.
  • Dr. Nester: “A Phase 2 Proof-of-Concept, Randomized, Double-Blinded, Placebo-Controlled Study of ACH-0144471 Treatment for 6 Months in Patients with C3 Glomerulopathy (C3G)”, Achillion Pharmaceuticals, Inc. for $171,000.
  • Dr. Reinking: “A Prospective, Open-Label, Active-Controlled Study to Evaluate the Pharmacokinetics, Pharmacodynamics, Safety, and Efficacy of Rivaroxaban for Thromboprophylaxis in Pediatric Subjects 2 to 8 Years of Age After the Fontan Procedure”, Janssen Research and Development, Inc. for $105,000.
  • Dr. Sharathkumar: “A Phase I/II, Open-Label, Adaptive, Dose-Ranging Study to Assess the Safety and Tolerability of SB-525 [AAV2/6 hFactor VIII Gene Therapy] in Adult Subjects with Severe Hemophilia A”, Sangamo Therapeutics, Inc. for $15,000.

Dr. Tsalikian Receives Awards for New Clinical Trials

Dr. Tsalikian received some new clinical trials recently as well.




  • “fliGHt: A Multicenter, Phase 3, Open-Label, 26-Week Trial Investigating the Safety, Tolerability and Efficacy of TransCon hGH Administered Once Weekly in Children with Growth Hormone Deficiency (GHD)”, Ascendis Pharma A/S, for $43,000.
  • “A Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Evaluate the Efficacy and Safety of Alogliptin Compared with Placebo in Pediatric Subjects with Type 2 Diabetes Melliltus”, Takeda Development Center Americas, Inc. for $70,000.
  • “Prospective, Multicenter, Single-Arm Study to Evaluate Efficacy, Safety and Pharmacokinetics of Denosumab in Children with Osteogenesis Imperfecta”, Amgen, Inc. for $80,000.

Dr. Ahrens Receives Awards for New Clinical Trials

Dr. Ahrens also received several new clinical trial awards recently:



  • “A Post Approval Observational Study to Evaluate the Long-term Effectiveness and Safety of Orkambi in U.S. Patients Who Completed Study VX12-809-105 Part A”, Vertex Pharmaceuticals, Inc. for $9,200.
  • “A Phase 3 Open-Label Study Evaluating the Long-term Safety and Efficacy of VX-659 Combination Therapy in Subjects with Cystic Fibrosis Who Are Homozygous or Heterozygous for the F508del Mutation”, Vertex Pharmaceuticals, Inc. for $70,000.
  • “A Phase 2 Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety, Tolerability, and Pharmacokinetics of PTI-428 in Subjects with Cystic Fibrosis”, Proteostasis Therapeutics, Inc. for $145,000.

Dr. Mathews Receives Awards for New Clinical Trials

Dr. Kathy Mathews, Vice Chair for Clinical Research, received funding for several new clinical trials recently:




  • “Expanded Access Protocol of Idebenone in Patients with Duchenne Muscular Dystrophy”, Santhera Pharmaceuticals (Switzerland), Ltd. for $1,500.
  • “A Phase 2 Study of the Safety, Efficacy, and Pharmacodynamics of RTA 408 in the Treatment of Friedreich’s Ataxia”, Reata Pharmaceuticals, Inc. for $224,000.
  • “A Phase 2 Randomized, Double-Blind, Placebo-Controlled Study of ACE-083 in Patients with Facioscapulohumeral Muscular Dystrophy”, Acceleron PHarma, Inc. for $327,000.
  • “A Randomized, Double-Blind Study to Evaluate the Efficacy and Safety of Tideglusib Versus Placebo for the Treatment of Children and Adolescents with Congenitcal Myotonic Dystophy”, AMO Pharma, Inc. for $128,000.
  • “A Randomized Double-Blind, Placebo-Controlled Trial Evaluating the Safety and Efficacy of Intravenous Delivery of Allogeneic Cardiosphere-Derived Cell in Subjects with Duchenne Muscular Dystophy (HOPE-2)”, Capricor Therapeutics for $165,000.

UISFCH Named Certified Children’s Cardiomyopathy Foundation Program

The children’s hospital has been named a certified Children’s Cardiomyopathy Foundation Program – one of only 38 such programs across the nation. The program recognizes medical center providing high-quality cardiac care and specialized disease management to children with cardiomyopathy.

Other newly accredited centers include University of Maryland Medical Center, Baltimore, Md.; Children’s Hospital of Michigan, Detroit, Mich.; Children’s Medical Center of Dallas, Dallas, Texas; and Children’s Hospital of Wisconsin, Milwaukee, Wisconsin. A complete list of accredited centers is available on CCF’s website.