Recent News

Two Cerebral Palsy Webinars This Month!

The Cerebral Palsy Research Network (CPRN) is planning two webinars this month on Wednesday, July 8 and Thursday, July 23 both at 8 pm ET. 

Lily Collison, Author
Lily Collison, Author, Spastic Diplegia–Bilateral Cerebral Palsy

On Wednesday, July 8, CPRN will interview Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy: Understanding the Motor Problems, Their Impact on Walking, and Management Throughout Life: a Practical Guide for Families, a recently released book about her experience as a parent of a young man (age 25) with bilateral cerebral palsy.   CPRN Chairman Paul Gross will interview Ms. Collison about her journey as the mother of a child with CP, how she made decisions about various interventions including jointly with her son to have a selective dorsal rhizotomy as an adult and why she chose to write a book.  Ms. Collison will be available for Q&A with attendees following the 25-minute interview.

Michael Kruer, MD
Michael Kruer, MD

On Thursday, July 23, Michael Kruer, MD, a pediatric neurologist and movement disorders specialist, will present his formative research on genetics and cerebral palsy entitled “Genetics and cerebral palsy – what difference does it make?” as a 5th presentation of CPRN research in the MyCP Webinar Series.  Dr. Kruer chairs the International Cerebral Palsy Genomics Consortium and is funded by the National Institutes of Health to research genetics and CP.  His groundbreaking research will launch in partnership with CPRN in the coming year and holds the potential to resolve many unanswered questions in causes and treatments for CP.  Join us for this 25-minute presentation followed by open Q&A with Dr. Kruer.

To receive instructions to join either of these webinars, you can sign up on the MyCP Webinar Series page on CPRN.  People who have already registered for the whole series will receive invitations to both webinars. Both webinars will be recorded for future viewing on the CPRN YouTube Channel.

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!