United Cerebral Palsy and the Cerebral Palsy Research Network announce strategic partnership
UCP President and CEO Armando Contreras
United Cerebral Palsy and the Cerebral Palsy Research Network have agreed upon a strategic partnership that aligns the respective organizations’ shared objectives and strategies to advance the health and well-being of people with Cerebral Palsy (CP) and related neurodevelopmental disabilities.
“Our organizations are mutually committed to enhancing the quality of life for people with cerebral palsy by fostering collaborative research, advancing care within our affiliate organizations and other healthcare organizations, promoting best practices by care providers, supporting community members with lived experiences, and advocating for greater opportunities for those living with CP,” said Armando Contreras, president and CEO of United Cerebral Palsy.
“United Cerebral Palsy’s support for expanding evidence and quality of care for people with CP is an ideal complement to our organization’s research infrastructure and care objectives,” said Paul Gross, president and CEO of the CP Research Network. “Its affiliates provide a unique way for us to involve people with lived experience in the research process.”
Under the partnership, both organizations pledge to:
- Collaborate on research initiatives on research and practice priorities.
- Jointly recruit clinician-researchers, affiliate providers, and community members with lived experiences to attend a UCP-sponsored "Family Engagement in Research" course presented by CanChild to launch in September 2024.
- Initiate one or more studies between CP Research Network and UCP affiliate care providers and families to improve outcomes for individuals with CP.
- Host the Eighth Annual CP Research Network Investigators’ Meeting in Phoenix, Arizona, in 2025.
In addition, Kristie Bjornson, CP Research Network Scientific Director, will join the UCP Research Council as a CP Research Network liaison. Bjornson is a leader in the field of CP research. She guides CP Research Network’s investigators’ efforts to pursue public funding from granting agencies such as the National Institutes of Health, the Patient-Centered Outcomes Research Institute, and the National Institute on Disability Independent Living and Rehabilitation Research.
The UCP Research Council is co-chaired by Valerie Pieraccini, Vice President of Clinical Operations & Innovations at UCP of Central Arizona, and Dr. Michael Kruer, director of the Pediatric Movement Disorders Program at the Barrow Neurological Institute at Phoenix Children’s. The Kruer lab is leading a genomics initiative within the CP Research Network that leverages a self-contained electronic iConsent platform to facilitate network-wide data-sharing for genetic discovery in CP.
Cerebral palsy is an umbrella term that refers to a group of neurodevelopmental disorders that impair a person’s body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance, according to the Cerebral Palsy Alliance. In most cases, CP is caused by disturbances to the developing brain during pregnancy or soon after birth. The federal Centers for Disease Control and Prevention (CDC) reports that approximately 1 in 345 children in the U.S. are diagnosed with cerebral palsy.
About United Cerebral Palsy
United Cerebral Palsy is the indispensable resource promoting the independence and inclusion of people with cerebral palsy, intellectual, developmental, and other disabilities through our network of affiliates and partnerships. Founded in 1949, UCP's 55 affiliates in the U.S. and Canada provide programs, resources, disability services, educational instruction and workforce training annually for more than 150,000 children and adults living at all levels of ability and stages of life. UCP believes people with disabilities should have the opportunity to achieve their fullest potential and “live life without limits.”
About the Cerebral Palsy Research Network
The Cerebral Palsy Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the U.S. to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health and wellness outcomes that people with cerebral palsy value most. We include the entire community in the research process, the development of education materials and the implementation of current clinical care pathways.
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Armando Contreras
United Cerebral Palsy, Inc.
+1 602-460-1374
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