Cerebral Palsy Research Network Blog

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Columbia’s Weinberg Family Cerebral Palsy Center Joins CPRN

The Cerebral Palsy Research Network (CPRN) announced that the Weinberg Family Cerebral Palsy Center (WFCPC) from Columbia University’s Irving Medical Center has joined the network.  The WFCPC is CPRN’s first site in New York City and provides a large and diverse patient population, including children and adults, for the studies conducted by CPRN.  The participation in CPRN, led by Jason Carmel, MD, PhD, includes an interdisciplinary team from orthopedic surgery, rehabilitation medicine, neurology and other clinical disciplines contributing patient and intervention data to the CPRN Cerebral Palsy (CP) Registry.

The Weinberg Family Cerebral Palsy Center is dedicated to improving the quality of life for people of all ages living with CP by providing comprehensive care, conducting groundbreaking research, and educating medical professionals, patients, and caregivers about the latest advances in cerebral palsy care. Members of the Weinberg CP Center team conducted over 3,700 patient encounters in 2019. Pediatric and adult services include orthopedics, physical medicine and rehabilitation, neurology, genetics, and mental health, along with social work and care coordination services. In conjunction with its clinical care mission, the Center’s academic efforts strive to bridge basic science and clinical research to directly impact the lives of patients living with cerebral palsy.

 “The goals and values of the CPRN are perfectly aligned with those of the Weinberg CP Center, and the CPRN is an incredible resource for multidisciplinary research and collaboration,” said Dr. Jason Carmel. “Our team is excited to begin contributing to the CPRN’s efforts, as well as participate in projects and initiatives that will undoubtably lead to a better understanding of how we can improve the lives of our patients.”

Knowledge Translation Tuesday: SDR for Adults

River Shannon trail in Limerick, Ireland
River Shannon trail in Limerick, Ireland

(This post in first in a series of knowledge translation posts that will be provided by our new guest author, Lily Collison). I’m Lily, mother of Tommy who is now aged 26. Tommy grew up in Ireland, studied journalism at New York University, and now lives in San Francisco where he works at Lambda School (an online coding school). Tommy has spastic diplegia, GMFCS level II. I recently published Spastic Diplegia–Bilateral Cerebral Palsy in conjunction with Gillette Children’s Healthcare Press. The book is a mixture of detailed medical information combined with a personal story, and all proceeds go to cerebral palsy (CP) research. I’m now going to be a guest author for the Cerebral Palsy Research Network (CPRN).

In February of this year Tommy had selective dorsal rhizotomy (SDR) at Gillette Children’s Specialty Healthcare, in Minnesota. SDR is a neurosurgical procedure that reduces spasticity by selectively cutting abnormal sensory nerve rootlets in the spinal cord. This procedure is mostly carried out in children and to a much smaller extent in adults. Recent research carried out by CPRN showed that 5% of those who have SDR were over 18 years. Tommy is therefore one of the minority of people who have SDR in adulthood. Over the next few weeks, I’ll write about SDR in adulthood and Tommy will also contribute (when he gets a break from working and rehabbing 🙂)

At this stage Tommy has a thick patient file at Gillette. At age nine he had single-event multilevel surgery (SEMLS) to address muscle and bone problems that had developed as he grew. At age sixteen he had orthopedic surgery to address knee pain, and at age eighteen a further minor orthopedic surgery. The possibility of SDR was first raised in Fall 2019, at a routine orthopedic appointment with Dr. Novacheck, Tommy’s orthopedic surgeon at Gillette for many years. A multi-disciplinary appointment was organized for December with consultants from neurosurgery, physical medicine and rehabilitation (PM&R), and orthopedics to evaluate Tommy’s suitability for SDR. The clinicians agreed that Tommy was a suitable candidate, and Tommy agreed to proceed with the surgery. SDR was carried out in February of this year, right before COVID caused widespread shutdown in March.

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Do you have questions for me about this post? I’m available on the MyCP.org forum (you will need to join MyCP if you are not a member) to discuss it.

CPRN Expands Knowledge Translation with Lily Collison

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.

Tommy Collison, a young adult with spastic diplegia
Tommy Collison, a young adult with spastic diplegia and son of author Lily Collison, chose to get a selective dorsal rhizotomy at age 25.

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.