Cerebral Palsy Foundation

National Cerebral Palsy Early Detection Initiative for High Risk Infants

Lead Organization

Cerebral Palsy Foundation

New York, New York, United States

http://www.yourcpf.org

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To learn more about – or provide significant funding to – this project, please contact Lever for Change.

Project Summary

Cerebral Palsy (CP) is the most common motor disability in children impacting 1MM+ Americans. CP is 30% more common in US black children. Lifetime costs exceed $1.5MM/person more than someone w/out CP. Costs for those born with CP in 2000 will total over $11.5 billion. 10,000+ US babies are diagnosed with CP each year with average age of diagnosis delayed to 24 months due to lack of early detection guideline implementation. Delayed diagnosis of high risk infants means interventions to improve outcomes don't begin before critical infant brain recovery time is lost. We can solve this problem by scaling up our successful clinical network ensuring implementation of best-evidence guidelines for detection of CP. Leveraging our proven knowledge translation/ dissemination skills with (501c3) Nationwide Children's Hospital's academic expertise in implementation science and healthcare models will ensure high risk babies receive earlier CP diagnosis leading to earlier interventions and better outcomes.

Problem Statement

Every year more than 10,000 babies in the US are diagnosed with Cerebral Palsy (CP), the most common motor disability in children affecting almost 1 million Americans. Despite medical advances that allow babies at high-risk for CP to survive, they're often not diagnosed with CP until 2 years old on average (sometimes much later), missing the most important period of early brain recovery. This problem should not be happening, because best-evidence tools to detect CP early have been published and effective interventions exist. But large-scale detection before 2 years of age has not occurred in US clinical settings. The gap between evidence and implementation into practice is costing children their chance to recover brain and body functions.There are several reasons for this gap:1.There is a short window of time, between 0-3 years of age, during when baby brains can best recover from injury. Yet clinicians are often not aware of the urgency of early diagnosis and intervention. 2.Even though all assessments currently exist to detect CP early, very few people have the knowledge to teach them systematically.3.Healthcare problems are often seen as gaps in science and medicine. However, this fails to acknowledge the organizational processes and business functions required for successful implementation of any care change. 4.Current follow-up of high-risk infants is mandated by the American Academy of Pediatrics. However, this follow-up is not clearly described, resulting in variations of schedules and practices across the US.

Solution Overview

Our solution will lead to a new national standard of care in High Risk Infant Follow Up for the detection and diagnosis of cerebral palsy. In the past decade, evidence for neuroplasticity and the brains ability to change in the first years of life has grown, as has the evidence for early interventions that are specific to the babies brain injury. Early detection of cerebral palsy will allow babies to start interventions earlier (including sitting, crawling, walking,, the use of their hands and communication skills) allowing function to be restored and new abilities to be developed. This will have major impact on their ability to participate in school, go to college and gain employment. Our solution will use the best and newest evidence-based tools for detection, leverage implementation science and knowledge translation principles, and prioritize access to information for families when they need it the most. Progress will be measured in three different ways and will include clinic outcomes, babies outcomes and parental satisfaction of services. It will have a deep and long lasting impact on the lives of over 10,000 babies across the United States born per year with cerebral palsy. Parents and families will also benefit as the project involves parent-targeted education, evidence-based research integration, and parent support through behavioral health resources.

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Project Funders

  • Hearst Foundation 2017 - 2018
  • Peter Shapiro Foundation

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