NHLBI and NICHD Workshop On Adults Born Preterm: The Epidemiology and Biological Basis for Outcomes

August 13 - 14 , 2015
Bethesda, MD


Due to dramatic improvements in perinatal and neonatal care in most industrialized countries over the past few decades, more than 95% of infants born before 37 weeks of gestation survive. These “preterm” infants constitute about 10% of the adult population. Recent research has shown that this cohort is at a higher risk for developing a range of adverse medical and social problems, such as hypertension, cardiovascular, cerebrovascular, and kidney disorders, diabetes and metabolic syndrome, and neuro-psychiatric and behavioral problems. Yet, these issues have not been widely appreciated by healthcare professionals caring for these adult patients.

Because even a modest increase (e.g., 10-20%) in risk for these chronic conditions can translate into a substantial population burden, the U.S. National Institutes of Health convened a conference of multi-disciplinary experts in August 2015 with the objective of elucidating the epidemiological, public health and societal burden of diseases among adults born preterm, while reviewing potential mechanisms and proposing educational and research priorities.



There is an urgent need to inform healthcare providers about adult outcomes for those born preterm. Low gestational age at birth, birth weight and the duration of initial hospitalization should trigger an alert to seek additional information such as major complications and long-term medication use. Obtaining birth and neonatal health history should be considered when assessing all adult patients seeking medical care, such that potential preventive steps can be implemented. The initial hospital discharge summary can be useful while assessing potential risks of “adult” diseases among such individuals. Increased availability of electronic medical records may render such efforts possible.

An organ-specific research agenda provides a strategy to better understand the mechanistic underpinnings of poor adult outcomes, and the factors that mitigate them. Insights from such studies can also help optimize neonatal care so that the burden of disease during adulthood among those born preterm can be reduced or ameliorated.

Research Agenda: Pulmonary

  • Is the clinical syndrome labeled “asthma” in adults born prematurely the same as the one in those born at term?
  • What characterizes the syndrome of obstructive lung disease in adults who were preterm? What are the best strategies for treatment of pulmonary disorders, such as asthma and increased airway reactivity?
  • What are the best strategies for maximizing lung health and disease prevention?
  • Have changes in NICU management altered/improved/changed long-term respiratory outcomes?
  • Does lower lung function contribute to adult respiratory morbidity and if so, what type?
  • What are the mechanisms behind the reported lung function abnormalities?
  • What are the mechanisms of increased risk of obstructive sleep apnea syndrome (OSAS) in adults born preterm?
  • What are the differences in responses to intervention for OSAS in adults born preterm compared with those born at term?
  • What are the clinical consequences of increased periodic limb movement syndrome?

Research Agenda: Cardiovascular and Metabolic

  • Does the etiology of preterm birth and degree of prematurity influence outcomes?
  • How do we balance immediate benefits versus long-term harm as in the case of corticosteroids and optimal infant nutrition and growth?
  • How can we decrease exogenous cortisol exposure during the postnatal period?
  • How do we assess the impact of postnatal complications and lifestyle on cardiometabolic disease later in life?
  • What are the pathways that lead to reduced physical activity and fitness?
  • How can we address the many challenges faced in epigenetic studies such as differences in tissue and cell type differences, changes over time, external influences and the need for multiple comparisons?
  • What are the best study designs to address the limitations of long-term cohort follow-up studies (survivor bias)?
  • Pathways and trajectories are important yet outcomes need to be obtainable within a reasonable period of time. Which interventions should be tested to improve cardio-metabolic health later in life?
  • What are the approaches to prevent obesity, based on an understanding of optimal postnatal growth among those born preterm?

Workshop Co-Chairs

  • A. Sonia Buist, M.D., Oregon Health & Science University
  • Nigel Paneth, M.D., M.P.H., Michigan State University

Workshop Participants

  • Carolyn Abitbol, M.D., University of Miami
  • Casey Crump, M.D., Ph.D., Stanford University School of Medicine
  • Jennifer Charlton, M.D., M.Sc., University of Virginia
  • Mina Desai, Ph.D., M.Sc., David Geffen School of Medicine at UCLA
  • Lex Doyle, M.D., M.Sc., The Royal Women’s Hospital, Melbourne, Australia
  • Neil Goldenberg, M.D., Ph.D., All Children’s Hospital, Johns Hopkins School of Medicine
  • Tina Hartert, M.D., M.P.H., Vanderbilt University School of Medicine
  • Petteri Hovi, M.D., Ph.D., University of Helsinki, Helsinki, Finland
  • Carl E. Hunt, M.D., F. George Washington University
  • Marit S. Indredavik, M.D., Ph.D., Norwegian University of Science and Technology
  • Julie Ingelfinger, M.D., Massachusetts General Hospital for Children
  • Julia Jaekel, Ph.D., Ruhr-Universität Bochum, Germany
  • Eero Kajantie, MD, Ph.D. Helsinki University Hospital and University of Helsinki
  • Philip T. Levy, M.D., Goryeb Children’s Hospital, St. Louis, MO
  • Andrew Lovering, Ph.D., University of Oregon
  • Valerie Luyckx, M.B.B.Ch., M.Sc. University of Zurich, Switzerland
  • Carole Marcus, M.B.B.Ch., University of Pennsylvania
  • Ana Menezes, Ph.D., University of Pelotas, Brazil
  • Laura Ment, M.D., Yale School of Medicine
  • Steven Paul Miller, M.D., C.M., FRCPC, University of Toronto
  • Katherine Morrison, M.D., FRCPC, McMaster University, Hamilton, Canada
  • Patricia A. Nixon, Ph.D., Wake Forest University
  • Chiara Nosarti, Ph.D., King’s College, London, UK
  • Michael O’Shea, M.D., M.P.H., Wake Forest School of Medicine
  • Katri Räikkönen, Ph.D., University of Helsinki, Finland
  • Michael Ross, M.D., M.P.H., David Geffen School of Medicine at UCLA
  • Yoel Sadovsky, M.D., Magee-Women’s Research Institute, University of Pittsburgh
  • Saroj Saigal, M.D., FRCPC, McMaster University, Hamilton, Canada
  • Renate Savich, M.D., FAAP, University of Mississippi Medical Center
  • Louis A. Schmidt, Ph.D., McMaster University, Hamilton, Canada
  • Jon Tyson, M.D., M.P.H., University of Texas Health Science Center
  • Ryan Van Lieshout, M.D., Ph.D., FRCPC, McMaster University, Hamilton, Canada
  • Lisa Washburn, M.D., Wake Forest School of Medicine
  • Kristi Watterberg, M.D., University of New Mexico School of Medicine
  • Dieter Wolke, Ph.D., University of Warwick, UK

NIH Staff

  • Larissa Aviles-Santa, M.D., NHLBI
  • Carol Blaisdell, M.D., NHLBI
  • Maurice Davis, D.H.A., M.P.A., M.H.S.A., NICHD
  • Donna Dimichele, M.D., NHLBI
  • Lynne Haverkos, M.D., M.P.H., NICHD
  • Rosemary Higgins, M.D., NICHD
  • Deborah Hoshizaki, Ph.D. NIDDK
  • John Ilekis, Ph.D., NICHD
  • Paul Kimmel, M.D., MAPC, FASN, NIDDK
  • Norma Lerner, M.D., M.P.H., NHLBI
  • Sara Lin, Ph.D., NHLBI
  • Barbara Linder, M.D., Ph.D., NIDDK
  • Christine Maric-Bilkan, Ph.D., NHLBI
  • Menachem Miodovnik, M.D., NICHD
  • Traci Mondoro, Ph.D., NHLBI
  • Antonello Punturieria, M.D., Ph.D., NHLBI
  • Marva Moxey-Mims, M.D., NIDDK
  • Tonse Raju, M.D., D.C.H., NICHD
  • Rebekah Rasooly, Ph.D., NIDDK
  • Uma M. Reddy, M.D., M.P.H., NICHD
  • Gail Pearson, M.D., Sc.D., FACC, FAHA, NHLBI
  • Victoria Pemberton, M.S., RNC, CCRC, NHLBI
  • Gail G. Weinmann, M.D., NHLBI
  • Shimian Zou, Ph.D., NHLBI