Cerebral Palsy Research Network Blog

CPRN Adds Shirley Ryan Ability Lab Expanding Coverage of Adults with Cerebral Palsy

Clinicians at Shirley Ryan Ability Lab Helping a Patient

Clinicians at Shirley Ryan Ability Lab Helping a Patient

The Cerebral Palsy Research Network (CPRN) welcomes it newest investigators Deborah Gaebler, MD, and Ana-Marie Rojas, MD and the Shirley Ryan Ability Lab (SRALAB) team to network. Dr. Gaebler, a physical medicine and rehabilitation physician (PM&R) and a past President of the American Academy for Cerebral Palsy and Developmental Medicine, played a key role in the initial planning for the CPRN CP Registry back in 2015. The addition of SRALAB will bring important geographic, age, and racial diversity to the population represented in the CPRN CP Registry. Since SRALAB is a free-standing rehab facility, it has the unique ability to continue seeing the children into adulthood. Its location in downtown Chicago provides a unique large urban setting for the treatment of people with CP. SRALAB treats approximately 1,000 patients per year.

“In addition to our strong clinical focus, there are streams of research in muscle transformation, mitochondrial function, robotics, biomarkers for pain in cp and early detection,” said Dr. Gaebler. “Our team is excited to join CPRN, participate in its CP Registry, and collaborate with the CPRN site investigators to improve outcomes for people with CP.”

The Shirley Ryan Ability Lab has a comprehensive cerebral palsy team has been working together for more than 30 years. It began as a collaboration with Dr. Luciano Dias and Dr. Gaebler and has grown now to include four pediatric rehabilitation physicians and three pediatric orthopedic surgeons working together in CP clinics. There are also four adult PM&R doctors that have expertise in adults with CP. Along with physician clinics, SRALAB can provide in house orthotics, physical therapists, occupational therapists, speech language, technology, and seating for children and adults. The spectrum of care includes inpatient, day rehab and outpatient services and focuses on improvement of function and to maximize outcomes related to the International Classification of Function.

Webinar: Practice Variation in Spastic Cerebral Palsy

Paul H. Gross
Paul Gross, Chairman and Founder, CPRN

The Cerebral Palsy Research Network (CPRN) announced its fourth webinar in its MyCP Webinar Series entitled a “Practice Variation in Spastic Cerebral Palsy” would be open to the public on Tuesday, June 2 at 8 pm via Zoom.  Paul Gross, chairman and founder of CPRN and Adjunct Associate Professor at the University of Utah, will present his findings in practice variation in spasticity management in North America.  This 20-minute presentation will be followed by an open Q&A with Mr. Gross.

Paul Gross is the principal investigator for an internally funded study to look at practice variation in the treatment of people with spastic cerebral palsy (CP). The presentation will include qualitative data from interviews that Mr. Gross conducted with more than 40 clinicians in North America about their spasticity management practices and also data from the CPRN CP Registry about surgical interventions for spasticity including selective dorsal rhizotomy and intrathecal baclofen pumps from five centers. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. While many treatments have been shown to be efficacious, clinical practice for treating spasticity varies greatly across North America. This presentation is planned for members of the community that are interested in learning about treatment differences and futures studies of spasticity management. Gross’s qualitative work has been used as preliminary data for the development and submission of two two grant applications to the National Institutes of Health to further study these variations in practice.

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

Vote for the Most Important Research Questions for Dystonia in CP!

The Cerebral Palsy Research Network (CPRN) invites you to cast your vote for the most important questions we need to answer about the diagnosis and treatment of dystonia in cerebral palsy (CP).  Register to vote by June 12th at MyCP.org to cast your online ballot the week of June 15, 2020! If you are a member of the patient community or a clinician that treats people with CP, your vote is your chance for your voice to be heard and influence the research agenda for dystonia in CP.

CPRN has had more than two hundred people participate in our education program about dystonia in CP. Research CP Dystonia Edition is an extension of CPRN’s original patient-centered education program and prioritized agenda published in August 2018 in Developmental Medicine and Child Neurology. The goal of this program is to focus attention on this under-researched condition in CP and to generate and publish a patient-centered list of prioritized concerns. 

Research CP Dystonia Edition participants have already created a list of “uncertainties” or questions that need to be resolved through research.  CPRN will open up voting up to the whole CP community – people with CP, caregivers, clinicians, therapists and advocates – for one week in mid-June 2020 to set the priorities.  Community members interested in voting on dystonia in CP research priorities should sign up on MyCP.org to receive voting instructions prior to voting.

CPRN will publish the resultant patient-centered research agenda and disseminate the results broadly to guide researchers in addressing the concerns that are most pressing to the community.  Since its publication in 2018, Research CP is often cited in other publications and research grants to reflect community priorities and steer research efforts to those that are most meaningful to the community.