Adults with Cerebral Palsy: Define challenge of treating, preventing complication

Cerebral Palsy Foundation, Inc., New York NY

Investigators

Abstract

[unreadable] DESCRIPTION (provided by applicant): Most individuals with CP are now surviving well into adulthood and are rapidly approaching the longevity of the general population. This heartening advance, however, poses new challenges to the medical community. As they age, these individuals often develop unique musculoskeletal and neurologic symptoms, such as severe pain, fatigue, and a premature decline in mobility and function. At present, little is known about how to manage these symptoms and thereby ensure that the aging CP population leads healthy and productive lives. [unreadable] [unreadable] The United Cerebral Palsy Research and Educational Foundation (UCPREF), in partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and Reaching for the Stars, a parent support group for families with a child with cerebral palsy, requests funding a major scientific workshop focused on adults with cerebral palsy. The workshop will take place in Atlanta, Georgia on September 16th and 17th, 2008, prior to the American Academy of Cerebral Palsy and Developmental Medicine's (AACPDM) Annual Conference. The purpose of the proposed workshop is to create a multidisciplinary effort that will explore current efforts to document the incidence and prevalence of cerebral palsy and then explore what is known about the magnitude of the problem of musculoskeletal and neuromuscular complications in adults with CP, reevaluate early interventions in terms of long-term outcomes, and assess the usefulness of cutting-edge technologies in neuro-rehabilitation to treat loss of mobility and functionality during middle and later life. Workshop participants will approach these issues from the standpoint of best care, continuity of care, and prevention of pain and early loss in function. The workshop will bring together leading scientists, physicians, healthcare professionals, families and individuals living with cerebral palsy to review current knowledge and develop a blueprint for future research and collaboration in the area of aging and rehabilitation in cerebral palsy. [unreadable] [unreadable] Society needs to address the issue of aging adults with CP from a standpoint of best care, continuity of care, and prevention of early loss in function as adults with CP are a growing population due to improved survival of low birth weight infants and concomitant increasing longevity. This workshop will create an interdisciplinary effort that clearly outlines the magnitude of the problem, the impact of early interventions on long-term health outcomes, the potential of new noninvasive imaging techniques and of neuro-rehabilitation modalities. At the end of the conference, a document will be generated outlining common conventional practice, the data informing such practice, knowledge gaps that beg further investigation, and a position paper with the next steps necessary for the community impacted by CP. [unreadable] [unreadable] [unreadable]