Building Better Healthcare
CEREBRAL PALSY GROWS UP
Cerebral palsy is the most common lifelong motor disability around the world, affecting millions. There are over 11 million adults worldwide living with cerebral palsy, many of whom have aged out of pediatric care without adequate support.
What problem are we solving?
There are more than 700,000 adults in the US and 11 million worldwide living with cerebral palsy. A life with CP comes with its own challenges, and access to healthcare shouldn’t be one. Our goal is to empower adults with CP to expect the same standard of healthcare received by us all, accompanied by the knowledge to finally deliver it.
Core Working Group
Currently an international core working group led by Principal Investigator Dr. Mark Peterson from University of Michigan are developing the guidelines.
Core Working Group Team:
Mark D. Peterson, PhD, MS, FACSM
Jennifer Ryan MSc, PhD
Rachel Byrne, PT
Emily Capellari, MLIS
Jan Willem Gorter, MD, PhD, FRCPC
Christine Imms, PT, PhD
Christina Marciniak, MD
Ashley Harris Whaley, MS, CCC-SLP
Seth Warschausky, PhD
Heakyung Kim, MD
Nathalie Maitre, MD
Jacqueline Searson, OTR/L
Guidelines Development
In 2023, we launched an international project to develop Preventative Healthcare Guidelines for Adults with Cerebral Palsy.
Goal: Develop and validate a clinical practice guideline (CPG) to enhance primary care quality for adults living with CP.
The project aims to create a fully vetted CPG that supports coordinated clinical care delivery, aiming to prevent secondary disease progression, multimorbidity, hospitalization, and premature mortality in this population. Anticipated outcomes include a deep understanding of their unique healthcare needs and effective strategies for seamless integration into clinics and learning health systems.
The guideline development will align with advocacy efforts, policy initiatives, and an implementation framework, focusing on transforming healthcare systems through knowledge translation and dissemination, focused on healthcare systems change.
Focus areas:
- Pain
- Musculoskeletal Health
- Gastrointestinal Health & Liver Health
- Endocrine Health & Malnutrition
- Mental Health
- Sexual & Reproductive Health
- Neurological Health
- Cognition
- Cardiometabolic Health
- Respiratory Health
- Urological & Renal Health
The first systematic review on pain in adults with cerebral palsy has been published. Visit the button below for the full text, graphical abstract, plain language summary, and more.
Advocacy
Being empowered through being equipped.
What has been missing from cerebral palsy research and advocacy efforts? The consistent and widespread involvement of adults with CP.
Which group largely doesn’t have strong enough health literacy skills needed to effectively navigate the healthcare system? Adults with CP.
Through a CPF-created advocacy curriculum and both virtual and hybrid stakeholder events, we will provide the foundation for adults with CP to be involved in global advocacy efforts while being connected to the research pipeline, and increasing health literacy skills.
Knowledge Translation and Dissemination
Knowledge is power. How information is shared is often as powerful as the knowledge itself.
Cerebral Palsy Grows Up has its own social media presence, curated to an adult audience. A video series, research deep dives, and a podcast will serve as avenues for engaging the adult CP community.
learn more
CPGU: The PoDCAST
By adults with cerebral palsy, for adults with cerebral palsy.
Join host Alexa Orban and members of the adult cerebral palsy for honest discussions around aging, parenthood, health and fitness, ableism, disability activism, and the adult cerebral palsy research landscape.
Cerebral Palsy Grows Up Advisory Board
Allee
Burke
Conway
Friel
Gaastra
Gavrich
Gray
Herman
Kelly
Kim
Najarian
Neal
Orban
Singer
Tsai
Wall
Yates
who are our partners?
As an adult with CP, I’ve found myself educating my own doctors about what Cerebral Palsy is and how it affects me.
Jessy Yates