New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

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.

A preview of a virtual meeting screen capture linking to blog post ‘CPRN Seeks to Translate Knowledge Broadly’

CPRN Seeks to Translate Knowledge Broadly

The Cerebral Palsy Research Network (CPRN) decided to increase its investment in knowledge translation following its annual investigator last week. For CPRN, to “translate knowledge broadly” means to reduce practice variation by implementing best practices and evidence-based medicine across the 26 sites in its network. Reducing practice variation has been demonstrated to improve outcomes which is central to the mission of CPRN. By tackling this in a whole network fashion, CPRN expects to improve outcomes for a broad population of people with cerebral palsy (CP) in North America.

CPRN held a modified version of its annual investigator meeting last week. Originally planned to be an in-person meeting of more than 40 investigators prior to the COVID-19 pandemic, last week’s meeting was attended by more than 50 investigators from more than 30 institutions via Zoom. Review of CPRN’s five-year strategic plan highlighted the need to invest more in knowledge translation. CPRN will pursue transforming its network into a learning health network – an established model for rapidly improving health care outcomes for a variety of diseases and conditions.

Peter Margolis, MD, PhD

Peter Margolis, MD, PhD

CPRN hosted Peter Margolis, MD, PhD from Cincinnati Children’s Hospital as a guest speaker and an expert on building Learning Health Networks. His presentation sparked an enthusiastic dialogue amongst investigators to establish new quality improvement initiatives including adult care for CP, hip surveillance and dystonia in addition to our existing initiative for intrathecal baclofen pumps. CPRN’s adult care initiative, led by CPRN Exec Committee member Ed Hurvitz, MD, has already begun planning the new initiative to improve treatments and outcomes adults with CP.  The other initiatives will establish leaders and working teams in the coming weeks.  CPRN expects its increased investment in quality improvement initiatives will build on its cerebral palsy registry, complement its research efforts and accelerate the improvement in outcomes for people with CP.

A preview image linking to blog post ‘Webinar: Cerebral Palsy and Epilepsy’

Webinar: Cerebral Palsy and Epilepsy

Adam Ostendorf, MD
Adam Ostendorf, MD

The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom.  Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry.  This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.

Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy.  Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients.  But little research has been conducted on this unique population.  Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research.  The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.

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!

Preview of the Cerebral Palsy Research Network and MyCP logos linking to blog post ‘CPRN Launches Community Education Webinars’

CPRN Launches Community Education Webinars

The Cerebral Palsy Research Network (CPRN) has announced a new community education webinar series focused on its findings and directions in research for cerebral palsy (CP).  One webinar per month will be presented by the principal investigator conducting the research and be followed by an open Q&A.  Interested participants must sign-up. These webinars will not only provide the community with an excellent opportunity to learn about important new research projects but also to interact with the clinician researchers conducting these studies.  Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings about adult health and wellbeing from the adult registry that was launched last year.  It will be presented by Dr. Mary Gannotti, a professor from the University of Hartford and the co-chair of the CPRN adult study group, who has led the development of the study in conjunction with several clinicians who treat and study adults with CP in addition to help from the CPRN Adult Community Advisory Committee.

The webinars scheduled for the rest of the year include:

Date Subject Speaker
April 23 Report from the CPRN Clinical Registry Garey Noritz, MD
May Cerebral Palsy and Epilepsy Adam Ostendorf, MD
June Practice Variation in Spasticity Management for Diplegics Paul Gross
July Functional Improved Related to Spasticity Treatments Kristie Bjornson, PT, PhD
August Practice Variation in Spasticity Management for Children who are not Ambulatory Sruthi Thomas, MD, PhD
September CP Genetics Michael Kruer, MD
October Speech and Participation Kristen Allison, PhD
November Family Attitudes About CP Diagnoses Bhooma Aravamuthan, MD, DPhil

MyCP is a web portal that provides the extended community of people with CP including caregivers and providers an open forum to discuss research, participate in research and read about the latest efforts led by CPRN. It is owned and operated by CPRN.

Deadline Extended: Research CP Dystonia Edition

The Cerebral Palsy Research Network (CPRN) extended the registration deadline for Research CP Dystonia Edition until Friday, December 13, 2019.  This extension means that people with an interest in dystonia in cerebral palsy (CP) – either members of the community or clinicians that treat people with dystonia in CP – can still join the research initiative to set a patient-centered research agenda for the condition!  The program requires participants  to watch three informational webinars about dystonia: definitions of dystonia, a dystonia care pathway and current research. The webinars total two hours of content delivered by leaders in the care, treatment and research of dystonia in CP. For existing participants, this extension gives more time to complete the program by viewing the remaining webinars over the next two and half weeks.

Webinar Survey
Overview and Definition Survey 1
A Care Pathway for Dystonia in CP Survey 2
Current Research and Gaps Survey 3

After viewing all three webinars, participants will be invited to submit their uncertainties or questions about treatment and research for dystonia in CP.  “Uncertainties” can be any question that participants have that they believe requires further research. These questions may be related to diagnosis, treatment recommendations, causes or long-term outcomes.  Next, in order to set the patient-centered research agenda, there will be a voting process on the proposed uncertainties and their importance. Although participants are not required to submit uncertainties in order to participate in the voting process, uncertainties must be submitted by December 13, 2019. The voting process to set the research agenda for dystonia in CP will take place in early 2020.

Want to join the Research CP Dystonia Edition initiative? Sign up on MyCP.org. Already a member of MyCP.org? Login in to automatically be enrolled!

Preview image linking to blog post ‘Watch the Research CP Dystonia Edition Educational Series’

Watch the Research CP Dystonia Edition Educational Series

The Cerebral Palsy Research Network (CPRN) released its educational series for Research CP Dystonia Edition on YouTube for public viewing. Research CP Dystonia Edition, a collaboration with CP NOW, is an initiative to set a patient-centered research agenda for dystonia in cerebral palsy (CP). The initiative led off with a three-part webinar series that stands alone as an educational resource. Those webinars have been recorded and posted to CPRN’s YouTube channel.

The webinar series includes the following topics and presenters:

Topic Presenter
Definitions of Dystonia in CP Dr. Bhooma Aravamuthan, Pediatric Neurologist from St. Louis Children’s Hospital and Washington University
A “Care Pathway” for Dystonia in CP Dr. Darcy Fehlings, Developmental Pediatrician from Holland Bloorview Kids Rehabilitation Hospital and University of Toronto
Research and Gaps in Dystonia in CP Dr. Michael Kruer, Pediatric Neurologist from Phoenix Children’s Hospital and University of Arizona

Each webinar is approximately 40 minutes in length and provides invaluable information about the current state of diagnosis and treatment for dystonia in CP. The webinar series is designed for both members of the community with CP and clinicians that treat people with dystonia in CP.

The Research CP Dystonia Edition initiative is an open community effort to define a patient-centered research agenda. If you are interested in joining the initiative, go to the Research CP Dystonia Edition page on CPRN to get additional details or to sign up for the program. The open enrollment period will close on November 30, 2019.

A preview image linking to blog post ‘Learn about Research on Dystonia in CP’

Learn about Research on Dystonia in CP

The Cerebral Palsy Research Network (CPRN) and its partner CP NOW will be hosting its third webinar – Current Research and Gaps — in its Research CP Dystonia Edition initiative.  Dr. Michael Kruer, a pediatric neurologist and movement disorders specialist at Phoenix Children’s Hospital, will describe the landscape of research and the importance of filling gaps in our knowledge to improve treatments and outcomes.  The webinar will take place at 8 pm ET on Wednesday, November 6, 2019.  The webinar will be recorded as well.  Please register to receive instructions for attending the webinar or watching the recording.

Research CP Dystonia Edition is an initiative to set a patient-centered research agenda for dystonia in cerebral palsy (CP).  It is targeted at members of the community that have lived with dystonia in CP and clinicians and therapists that treat dystonia in CP.   At the conclusion of the webinar series, participants will be invited to help set the priorities for research in dystonia in CP.

Dr. Darcy Fehlings on Dystonia in Cerebral Palsy

Darcy Fehlings, MD, MsC
Dr. Darcy Fehlings describes the Care Pathway for dystonia in CP.

In last week’s webinar, Dr. Darcy Fehlings, a developmental pediatrician and expert in the treatment of dystonia, offers an in-depth overview of the American Academy for Cerebral Palsy and Developmental Medicine’s Care Pathway for Dystonia in CP. Dr. Fehlings led the team that developed this clinical practice summary covering the diagnosis, care and treatment of dystonia in CP. She also discusses the Hypertonia Assessment Tool (HAT), a practical tool (that she developed), that allows clinicians to efficiently differentiate among spasticity, rigidity and dystonia. As more clinicians learn about the HAT and implement it into their practice, people living with CP and their providers will be in a better position to understand and properly address its symptoms. 

Living with dystonia in CP can be very painful, confusing to identify and difficult to treat. Dr. Darcy Fehlings acknowledges all of these points and presents the current information available to clinicians to best address the symptoms of individuals who have dystonia in CP.

This webinar can be viewed online and is the second in a three-part series called Research CP Dystonia Edition. It runs for approximately 75 minutes (including the Q and A).  More than 100 people have viewed the educational webinars about dystonia in CP since the program began on October 16th 2019. The webinar series lays the educational foundation for completing this initiative’s objective to create a patient-centered research agenda for dystonia in CP. Interested community members, clinicians, therapists and researchers are encouraged to sign up for Research CP Dystonia Edition on MyCP.org.  The process of establishing the research agenda begins in mid-November and is open only to people who have registered at MyCP.org. Or join us for this week’s webinar when Dr. Michael Kruer reviews current research and gaps in knowledge for dystonia in CP!

Sign Up: A Care Pathway for Dystonia in CP

The Cerebral Palsy Research Network (CPRN) and CP NOW invite you to join us on tonight, Wednesday, October 30, 2019 at 8:00 pm ET for a webinar with Dr. Darcy Fehlings to learn about the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) ‘Care Pathway’ for dystonia in cerebral palsy (CP).

The dystonia care pathway summarizes existing tools for the diagnosis of dystonia in CP and the latest evidence about the care and treatment for this condition. Dr. Fehlings led the team who developed this information. Dr. Fehlings also co-developed a clinical tool to identify dystonia which is called the Hypertonia Assessment Tool (HAT). Dr. Fehlings’ research has demonstrated that dystonia is far more common in CP than previously thought. 

This webinar is the second in the three-part series for Research CP Dystonia Edition. It will run for approximately 45 minutes and be followed by 30 minutes of questions and answers. Our target audience is community members experiencing dystonia in CP and clinicians and therapists that treat dystonia. Participants who listen to all three webinars will be invited to participate in developing a formal research agenda for dystonia in CP.

Community members and providers interested in participating should read the details of Research CP Dystonia Edition. Or just sign up for the webinar!

A preview image linking to blog post ‘Research CP Dystonia Edition Available for Viewing’

Research CP Dystonia Edition Available for Viewing

Dystonia in cerebral palsy (CP) is not well understood. The Cerebral Palsy Research Network (CPRN) and its strategic partner CP NOW are sponsors of a program called Research CP, which is a collaborative group of CP community stakeholders trying to make a difference in CP research.  The latest series of webinars is called Research CP Dystonia Edition and the first webinar was last week.  It is now posted for public viewing.  The webinar presentation is 45 minutes and covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP).  More than fifty participants watched the webinar. Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the 30 live attendees who included parents of children, people with CP, clinicians and therapists.

The introductory webinar for Research CP Dystonia Edition is the first of three in a series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge.  People that attend or watch the webinar series will be invited to collaborate in an agenda setting process to determine the most important questions to be researched about dystonia in CP.  At the conclusion of the research agenda development, CPRN/CP NOW will seek to publish a paper describing the process and the results from Research CP Dystonia Edition.  In addition to broadly sharing the results of the process, CPRN will use the finalized agenda to drive its future research efforts related to dystonia in CP.

There is still time to get involved in the process!  Clinicians and community members can sign up at MyCP to participate in future webinars. The first webinar is available for viewing here.  The next webinar, entitled “A ‘Care Pathway’ for Dystonia” will be presented by Dr. Darcy Fehlings on October 30, 2019.  If you haven’t registered for the second webinar, you can do so here.  Please note that in order to participate in setting the research agenda, you must watch all three webinars prior to November 11, 2019 when the agenda setting will begin.  You don’t have to watch them live as they are recorded and can be replayed.  We hope you can participate and are excited to make progress on better understanding dystonia in relationship to CP.  With your help, we can prioritize the most important areas to study and hopefully make a difference in outcomes for people with dystonia in CP.