NewsMar 1, 2018

International Group of Spina Bifida Experts Shape Future Research and Share Insights for Practical Care

A Special Issue of the Journal of Pediatric Rehabilitation Medicine is designed to inform and inspire researchers and clinicians caring for patients with this complex condition

Amsterdam, NL, March 1, 2018 – Spina bifida (myelomeningocele), a serious and complex spinal cord birth defect, has an estimated prevalence of slightly over three cases per 10,000 live births. As medical and surgical  interventions have improved, the life expectancy of individuals with spina bifida has increased.

However, further research to address the complexities of this multi-system condition more effectively is needed. In order to provide a multidisciplinary forum for research in spina bifida, the Spina Bifida Association (SBA) sponsored the Third World Congress on Spina Bifida Research and Care in 2017. This special issue of the Journal of Pediatric Rehabilitation Medicine presents significant contributions from that conference.

One of the primary goals of the SBA is to improve the health and quality of life of individuals with spina bifida, who require healthcare from specialists across many disciplines. Once considered a pediatric condition, it is believed that there are now more adults living in the United States with spina bifida than children. Whether for adults or children, research is still essential to understanding spina bifida, finding better methods to treat people, and improving their health outcomes and quality of life.

Guest Editors Timothy Brei, MD, Professor of Developmental Pediatrics at Seattle Children’s Hospital, and Amy Houtrow, MD, MPH, PhD, Director of the Spina Bifida Program at Children’s Hospital of Pittsburgh and Associate Professor of Physical Medicine and Rehabilitation and Pediatrics, University of Pittsburgh School of Medicine, note that “this special collection of insightful research and review articles resulting from the last world congress is the culmination of the work by numerous researchers and clinicians who are dedicated to advancing the care of children and adults with spina bifida.

It further supports the goals set forth in during Spina Bifida Awareness month, ‘Care About SB Care.’ Sara Struwe, President and CEO of the Spina Bifida Association, adds, “While the World Congress events are crucial to  improving care for people with spina bifida, equally significant is making sure that others know about the research related to their care. This why I’m delighted that the Journal of Pediatric Rehabilitation Medicine: An  Interdisciplinary Approach is amplifying the research presented at the Third World Congress on Spina Bifida Research and Care.”

The Congress represented the single largest and impressive forum of research related to Spina Bifida and included the breadth of research in the field, from bench to bedside and beyond. Published commentaries cover regenerative medicine, genetics, poverty and how it impacts care available to individuals living with spina bifida worldwide, trauma care for spina bifida patients, and self-management from both practical and theoretical perspectives.

Original research articles covering clinical and health services focus on topics ranging from managing the transition from pediatric to adult care, daily time management in children with spina bifida, bowel and bladder function, and the creation of care networks for patients. These and other articles provide an extensive grounding in the current state of spina bifida research and practical clinical care of spina bifida patients.

For those already devoted to spina bifida care, many are familiar with the work of Dr. Jay Neufeld, who recently passed away. This special issue includes professional and personal tributes to “Dr. J.,” who launched and for many years served as Editor-In-Chief of the journal, and was a major force in driving the field of pediatric rehabilitation. His legacy of dedication, action, and advocacy for children with disabilities and their families will live on.

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NOTES FOR EDITORS
Papers presented at the Third World Congress on Spina Bifida Research and Care, March 2017
Journal of Pediatric Rehabilitation Medicine, Volume 10, Issue 3-4
Guest Editors: Timothy Brei, MD, and Amy Houtrow, MD, MPH, PhD
View the issue at https://content.iospress.com/journals/journal-of-pediatric-rehabilitationmedicine/10/3-4
Full text of articles is available to journalists upon request. Contact Diana Murray, IOS Press, at +1
718-640-5678 or d.murray@iospress.com for additional information. Journalists who wish to interview
the authors or should contact Timothy Brei, at Timothy.Brei@seattlechildrens.org, or Amy Houtrow at
houtrow@pitt.edu. To reach the Spina Bifida Association for comment, please contact Sheliah Roy at sroy@sbaa.org

ABOUT THE JOURNAL OF PEDIATRIC REHABILITATION MEDICINE
The Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach is an international
journal designed to parallel the multidisciplinary team approach of caring for a child with an acute or
chronic disease. Issues are primarily themed and broad in scope including, but not be limited to
cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, amputation, muscular
dystrophies of all types, stroke, cancer, mental retardation, developmental delays, and others.
www.iospress.nl/journal/journal-of-pediatric-rehabilitation-medicine

ABOUT IOS PRESS
IOS Press is headquartered in Amsterdam with satellite offices in the USA, Germany, India and China
and serves the information needs of scientific and medical communities worldwide. IOS Press now
publishes over 100 international journals and about 75 book titles each year on subjects ranging from
computer sciences and mathematics to medicine and the natural sciences. www.iospress.com

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