2013 Summit Report

washington-dc

Neonatal Encephalopathy and Hypoxic Ischemic Encephalopathy: Advancing the Science and Improving Outcomes

National Institute of Child Health and Human Development May 8-9, 2013

IMPACT for CP in conjunction with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) held a workshop on neonatal encephalopathy (NE), hypoxic ischemic encephalopathy (HIE), and cerebral palsy (CP) in May 2013.

Neonatal encephalopathy affects up to 3.3/1000 term and late preterm infants in the developed world. Hypoxic ischemic encephalopathy, a subset of neonatal encephalopathy, affects 1-2/1000 infants per year. Cerebral palsy is one of the outcomes associated with NE and HIE, and approximately 30% of term and late preterm CP will have neonatal encephalopathy.

Recent meta-analyses show strong evidence that cooling for HIE reduces mortality, major neurodisability, and specifically cerebral palsy. Cooling for HIE is a landmark discovery. The field is poised to move forward by evaluating adjuvant therapies for infants whose course remains difficult despite cooling. Combination therapies (cooling “plus”) may improve neonatal survival and outcomes. Despite the progress made in treatment with cooling, the etiology of NE and HIE is incompletely understood.

The purpose of the summit was to:

  1. Identify gaps in knowledge by reviewing basic, translational and clinical evidence for neonatal encephalopathy, hypoxic ischemic encephalopathy, and cerebral palsy
  2. Bring 40 internationally renowned experts together to develop a research agenda for the prevention and treatment of encephalopathy and cerebral palsy.

Summit outcomes included:

  1. Researchers presented on six new cooling “plus” possibilities already in human trials. All agreed that collecting uniform data to aggregate quickly was optimal
  2. Researchers agreed that to identify which babies respond best to which intervention collaborations are needed, under the banner of IMPACT for CP
  3. Agreement to collect additional data such as placental pathology, blood spots and DNA in future trials that are under development
  4. Existing resources/data sets/repositories will be assembled into one place (IMPACT for CP website)
  5. Data will be pooled from existing cooling studies that have already been completed to investigate whether some of the research questions that are of high priority can be answered quickly.
  6. Working groups will be formed to forge new projects such as a major new aetiological study of encephalopathy
  7. The logistics of a trial for infants now excluded from cooling trials (but at high risk of having CP) because of fetal growth restriction or birth defects will be investigated
  8. A gap identified was to look at systematic early diagnosis of CP and early intervention following discharge from a neonatal intensive care unit
  9. A uniform approach to neuro-imaging will be recommended
  10. Recommendations for making the most difference in the developing world for these infants will be further discussed.

Attendees

Nadia Badawi, PhD
The Children’s Hospital at Westmead; Cerebral Palsy Alliance, Australia

Roberta A. Ballard, MD
University of California, San Francisco, USA

Mariana C. Baserga, MD
University of Utah, USA

Joanna Beachy, MD, PhD
University of Utah, USA

James A. Blackman, MD, MPH
Cerebral Palsy International Research Foundation, USA

Eve Blair, PhD
Telethon Institute for Child Health Research, Australia

Janice E. Brunstrom-Hernandez, MD
Washington University School of Medicine, St. Louis Children’s Hospital, USA

Taeun Chang, MD
Children’s National Medical Center, USA

C. Michael Cotten, MD, MHS
Duke University Medical Center, USA

Mary E. D’Alton, MD
Columbia University Medical Center, USA

Linda S. de Vries, MD, PhD
UMCU, Wilhelmina Children’s Hospital, The Netherlands

Sarrah Eltinay, MD
Medical Research Center, Hamad Medical Corporation, Qatar

Donna M. Ferriero, MD, MS
UCSF Benioff Children’s Hospital, USA

Hannah C. Glass, MDCM, MAS
UCSF Benioff Children’s Hospital, USA

Sahar M.A. Hassanein, MD, PhD
Children’s Hospital School of Medicine, Ain Shams University, Egypt

Rosemary D. Higgins, MD
Eunice Kennedy Shriver National Institute of Child Health and Human Development, USA

Deborah Hirtz, MD
National Institute of Neurological Disorders & Stroke, USA

Abbot R. Laptook, MD
Warren Alpert Medical School of Brown University, Women & Infants Hospital of Rhode Island, USA

Helen Liley, MBChB, FRACP
Mater Health Services, Australia

An Massaro, MD
Children’s National Medical Center, USA

Amit Mathur, MBBS, MD
Washington University School of Medicine, USA

Sarah McIntyre, PhD
Cerebral Palsy Alliance, University of Notre Dame Australia

Cathy Morgan
Cerebral Palsy Alliance, University of Notre Dame Australia

Michael E. Msall, MD
University of Chicago Comer Children’s Hospital, USA

Karin Nelson, MD
National Institute of Neurological Disorders and Stroke, USA

Iona Novak, PhD
Cerebral Palsy Alliance, University of Notre Dame Australia

Juliana Patkai, PhD
Groupe Hospitalier Cochin-Broca-Hotel Dieu, France

Anna Penn, MD, PhD
Children’s National Medical Center, USA

Sajjad ur Rahman, MBBSDCH, MCPS, FCPS, FRCPCH, FNP
Hamad Medical Corporation, Qatar

Tonse Raju, MD
Eunice Kennedy Shriver National Institute of Child Health and Human Development, USA

Raymond W. Redline, MD
Case Western Reserve University School of Medicine, USA

Diana Schendel, PhD
University of Aarhus, Denmark

Guillaume Sébire, MD PhD
Sherbrooke University, Canada

Seetha Shankaran, MD
Wayne State University School of Medicine, USA

Cally Tann, MBChB, MRCPCH, MSc, DTM&H
London School of Hygiene & Tropical Medicine, UK

Mariane Thoresen, MD, PhD
University of Bristol, UK

William F. Walsh, MD
Monroe Carell Jr. Children’s Hospital, Vanderbilt University, USA

Michael D. Weiss, MD
University of Florida, USA

Rob White
Cerebral Palsy Alliance, Australia

Yvonne Wu, MD, MPH
University of California, San Francisco, USA