First World Congress on Spina Bifida Research and Care

Spina Bifida Association, Washington DC

Investigators

Abstract

DESCRIPTION (provided by applicant): The Spina Bifida Association (SBA) is the only national voluntary health agency working for people with Spina Bifida and their families through research, education, advocacy, and service. SBA seeks to expand its own research goals and further the National Institutes of Health mission, science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability, by convening the First World Congress on Spina Bifida Research and Care, a premier forum for national and international specialists, to take place March 15-18, 2009. In hosting this meeting, SBA is creating a forum for professionals interested in research and improving care related to Spina Bifida that does not exist elsewhere. With the theme, "The Future is Now," the First World Congress on Spina Bifida Research and Care will serve as a forum for developing and examining basic and clinical research on Spina Bifida. The issues and challenges in research and health care for those living with Spina Bifida will be examined through a multidisciplinary perspective, including that of specialists in neurosurgery, urology, orthopedics, nutrition, genetics, epidemiology, physiatry, nursing, and social work. The goal of this meeting is to provide a multidisciplinary forum to present new basic science and clinical research including health care delivery research, novel treatments, or pilot projects. Secondary goals are to engage researchers in Spina Bifida in developing a research strategy for further study of these issues and challenges, based on information resulting from this meeting. The First World Congress on Spina Bifida Research and Care will be a research development conference focused on discussing the future of care for this challenging and complex birth defect. The First World Congress on Spina Bifida Research and Care takes the next steps in developing and examining basic and clinical research on Spina Bifida, while stimulating a multidisciplinary discussion on the issues and challenges in availability and quality of health care for those living with Spina Bifida. The First World Congress on Spina Bifida Research and Care will be the first in a series of comprehensive, scientific conferences dedicated to Spina Bifida to be convened by the Spina Bifida Association every three years. NIH's involvement would be essential in this innovative meeting which brings together multidisciplinary experts. This meeting is one critical step along the long and complicated path toward developing quality and improvement measures that are applicable not only to the Spina Bifida community but also to all Americans. This meeting will positively influence future research in the multidisciplinary fields serving the Spina Bifida community. PUBLIC HEALTH RELEVANCE: SBA seeks to expand its own research goals and further the mission of the National Institutes of Health, science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability, by convening the First World Congress on Spina Bifida Research and Care, a premier forum for national and international specialists, to take place March 15-18, 2009. In hosting this meeting, SBA is creating a forum for professionals interested in research and improving care related to Spina Bifida that does not exist elsewhere.