The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with cerebral palsy (CP). The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.
The mission of the Cerebral Palsy Research Network (CPRN) is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.
The Cerebral Palsy Research Network (CPRN) interview with author and mother Lily Collison, MA, MSc on July 8, 2020 was so popular that we have invited her to be a guest author / blogger on CPRN to expand our knowledge translation objective. A critical aspect of knowledge translation in medicine is making medical information and evidence more accessible to consumers — members of the community of people with cerebral palsy (CP). Ms. Collison’s book entitled Spastic Diplegia — Bilateral Cerebral Palsy is the quintessential example of knowledge translation. As the mother of a young man with CP, she worked closely with the medical professionals at Gillette Children’s Specialty Healthcare to explain the cause, progression and treatment of spastic diplegia for parents of young children, and adolescents and adults with that subtype of CP. CPRN’s third strategic objective is to translate knowledge broadly and “tapping into the experiences and writing of Ms. Collison is a great way to begin to fulfill that objective,” said Paul Gross, chairman of CPRN.
CPRN has invited Ms. Collison to provide series of blog posts that detail various stages of her son’s growth and progress with CP and the decision making process for various treatments he has received. These blogs will be presented in a reverse chronology starting with his recent decision to under go a selective dorsal rhizotomy — an invasive neurosurgery that seeks to reduce spasticity through the cutting of specific sensory nerve roots in the spine. The blog posts will include not only her experience and decision making, but also, where appropriate, commentary from her son Tommy. Each post will present various interventions, progress, personal stories and outcomes as well as highlighting the decision making process and the clinical evidence that was or was not available to make these decisions. Ms. Collison will also be available on the MyCP Discussion forum to answers specific questions about her book, decisions she has made and the blog posts that she writes. The blog series will begin next week on CPRN.org and be cross posted on MyCP.org. If you want to follow the CPRN blog, you can sign up to receive alerts of new posts.
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.
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.