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.

Anticipated outcomes include a deep understanding of their unique healthcare needs and effective strategies for seamless integration into clinics and learning health systems. The project aims to create a fully vetted CPG that supports coordinated clinical care, aiming to prevent secondary disease progression, multimorbidity, hospitalization, and premature mortality in this population.

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:

•Mental health

•Cardiometabolic health

•Neurological & cognitive health

•Endocrine & renal health

•Gastrointestinal health

•Musculoskeletal health

•Pain

•Respiratory health

•Sexual health

•Urological health

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.

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Learn More About Cerebral Palsy Grows Up

Building better healthcare for adults with cerebral palsy.

Find More Clinical Trials

CPF is committed to sharing the most up to date Cerebral Palsy clinical trial and research study information with you on an ongoing basis. Currently there are 46 studies recruiting adults in the United States.

Pain in adults with cerebral palsy: A systematic review

Jennifer M. Ryan, Jessica Burke, Rachel Byrne, Emily Capellari, Adrienne Harvey, Neil E. O’Connell, Donna Omichinski, Elisabet Rodby-Bousquet, Mark Peterson, The Adult CP Clinical Practice Guideline Working Group

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.

Listen here