The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality improvement projects to improve healthcare for people with cerebral palsy.

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

Our Impact Grows: AACPDM Meeting

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

The final program of the annual meeting for the American Academy for Cerebral Palsy and Developmental Medicine in Las Vegas

Clinicians and researchers who focus on cerebral palsy (CP) gather in Las Vegas, Nevada, this week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). It is the first in-person meeting in three years, and the CP Research Network will be there in force. Our work will be spotlighted in three mini-symposia and three morning seminars, as well as one paper presentation and one scientific poster. All are geared toward spotlighting not only the results of our research, but also how engagement in our network can facilitate continued research and the implementation of evidence-based practices to improve outcomes for people with CP.

The mini symposia will be two hours in length total with a short discussion after. Topics include:

  • Building a Center of Excellence in Cerebral Palsy: Care Delivery Models Across Cerebral Palsy Research Network Sites – Laurie Glader, MD, a developmental pediatrician, CP Research Network Steering Committee member and Scientific Co-chair for the AACPDM meeting, will lead a presentation and discussion of different “models of care” from leading centers in the CP Research Network.
  • The State of Tone Management in Children with CP in North America: What Can We Learn from Each Other? CP Research Network investigator Sruthi Thomas, MD, PhD, is leading a session with other physicians from the network to discuss different strategies for tone management.
  • Using Quality Improvement (QI) to Change Systems and Improve Care in Cerebral Palsy – Amy Bailes, PT, PhD, and CP Research Network QI coach, will lead a discussion including clinical leaders and consumers about three of our active quality improvement initiatives including adult care, dystonia diagnosis, and hip surveillance.

Our morning seminars, each of which are one hour in length, include:

  • How to Participate in Multi-center Clinical Research and Quality Improvement (QI) with the CP Research Network
  • NINDS Cerebral Palsy Common Data Elements for Lower Extremity Orthopedic Interventions
  • Communication is a Gateway to Participation: State of the Science and Future Directions

And our free papers and posters include:

  • The Development and Sensibility Evaluation of the CPCHECKList© – A Comorbidity Index for Severe Cerebral Palsy and;
  • an Update from the Cerebral Palsy Research Network Registry.

These symposia, seminars, posters, and papers all seek to improve care and advance research at the national level. The breadth and depth of the network’s activities are very visible at this annual meeting and will draw new clinician researchers into our circle, eventually expanding our impact.

Dr. Laurie Glader, Director of the Cerebral Palsy Program at Nationwide Children's, with shoulder length blond hair smiling.

Research CP: Progress Report

Next Wednesday, September 14th, Dr. Laurie Glader will lead a MyCP webinar updating participants on the progress of our patient-centered research agenda established in 2017 through our Research CP program. Research CP was run by the Network with the goal of setting a patient-centered research agenda for CP. It was funded by the Patient-Centered Outcomes Research Institute. The program included a webinar series, a collaborative agenda setting and prioritization process, and concluded with an in-person workshop in Chicago in June 2017. The results of this process, published in 2018 in Developmental Medicine and Child Neurology, can be found on our website. Since that time, the CP Research Network has used the findings from Research CP to guide our research investments and study development.

This webinar will allow the CP community to see the progress that the Network and the creation of the cerebral palsy registry have had on advancing the pace of CP research and answering the questions about CP that were raised through the Research CP program.

After the presentation, Dr. Glader, a developmental pediatrician who directs the CP program at Nationwide Children’s Hospital in Columbus, Ohio and is a member of the CP Research Network Steering Committee, will be available to answer questions from the community about current and future CP research network projects.

The webinar is free and will be recorded for people who cannot attend. Please join us for the presentation and discussion at 8 pm Eastern Time via Zoom. The presentation is open to the public and will have content that is meaningful to community members of all ages, clinician researchers and companies serving the CP community. You may register to receive an invitation to the webinar or a notification of when we post the recording.

Grip Study Results: MyCP Webinar

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

On Monday, June 20 at 8 pm ET, Ed Hurvitz, MD, will present the preliminary findings of his study of grip strength as biomarker for body composition in cerebral palsy (CP). This presentation will appeal to all adults with CP and parents/caregivers alike because of the importance of understanding the role of body composition to lifelong health in CP and risks it may present to members of our community. Dr. Hurvitz is the chair of Physical Medicine and Rehabilitation at the University of Michigan and a leading researcher into challenges that people with CP face as they age.

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz will present the findings from his pilot study on Grip Strength

Dr. Hurvitz was the subject of last week’s CP Stories blog post that spotlights members of the extended CP community for their role in championing research either as a passionate adult with CP or caregiver or as a clinician/researcher committed to improving health outcomes for people with CP. He leads a group of researchers at the University of Michigan that study a number of health and fitness related outcomes for adults with CP. He is also a member of the CP Research Steering Committee and chairs its Adult Study Group.

The Grip Study pilot received funding from the Foundation of Physical Medicine and Rehabilitation in October 2020. In Monday’s MyCP webinar, Dr. Hurvitz will present that rationale for the study, the findings from the pilot study conducted at the University of Michigan and his plans to expand the study within the CP Research Network to validate its findings in a multi-center context. The presentation will be followed by an open Q&A. People interested in watching the webinar can sign-up on the MyCP Webinar Series page to receive the webinar link. If you have registered for the MyCP webinar series, there is no need to register again. The link will be emailed to you prior to the start of the webinar. Join us!

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

CP Stories: Edward A. Hurvitz, MD

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz is a member of the CP Research Network Steering Committee and the chair of the network Adult Study Group.

Dr. Edward A. Hurvitz is Chair of the Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He is a physiatrist by training, specializing in pediatric rehabilitation medicine. But as the children he worked with grew up, he became increasingly focused on adults with childhood-onset disabilities, particularly cerebral palsy (CP). This shift was based largely on the needs of his patients: “For my adult population, the most motivating factor is the great need for someone who has knowledge and interest in their care,” said Dr. Hurvitz. The CP-related research he has been involved with is expansive: over the years, the Michigan Adults with Pediatric Onset Disability team has published research on pain and pain treatment, bone health, renal disease, mental health, cardiovascular health, body composition, and the diagnosis of these chronic diseases.

Although Dr. Hurvitz has remained active as a researcher throughout a career spanning more than three decades, he has also served as a sort of advocate, working to get a younger generation of doctors and researchers interested in CP. He mentioned that the CP Research Network has been helpful in this regard: “[Working with the CP Research Network] has given me the chance to interact with young faculty and try to bring them in more to the world of CP research, along with giving them the tools to do it,” Dr. Hurvitz explained.

The rationale here is that if there is growth in the amount of researchers dedicated to CP, funding devoted to CP will likewise increase. Ideally, Dr. Hurvitz explained, all major medical centers that train early-career researchers would have CP-related programs. If the National Institutes of Health and other grantmaking agencies were, in Dr. Hurvitz’s words, “flooded with high quality grants related to CP,” research would increase exponentially. Specific areas that Dr. Hurvitz would like to see an increased focus on include research that engages with the International Classification of Functioning (ICF), which would entail finding interventions to improve overall health for people with CP and developing ways to increase their participation in vocational and recreational activities.

Likewise, because so many people with CP depend on their primary care physicians to correctly diagnose secondary health issues and make the appropriate referrals, Hurvitz also sees increased focus on education about CP as a vital step. “I would do more to teach primary care physicians about what we are learning about preventive care for people with cerebral palsy,” said Dr. Hurvitz. As telemedicine continues to grow, Dr. Hurvitz is optimistic about its potential to connect people with CP to specialists all over the country: “Telemedicine has great potential to allow health care providers knowledgeable about adults with CP to provide care and partner with providers in the individual’s local area. CPRN is working on a project to better identify these needs and provide education to people with CP about the importance of finding a knowledgeable provider,” In this same vein, he also considers it important to provide individuals with CP and their families with the tools to navigate health care and social service systems that are often ill-equipped to handle their needs.

Sorely needed investment in public infrastructure—increases in the frequency and reliability of public transportation, self-driving vehicles, and personal robotics aid devices, for example—also stands to benefit adults with CP. Additionally, investments in technology—voice-activated software, communication devices, and learning platforms tailored to children with learning disabilities—will also likely improve the day-to-day lives of people with CP.

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for Dr. Hurvitz’s webinar on Grip Strength and Body Composition on Monday, June 20 at 8 pm ET

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Dr. Hurvitz continues to cover a wide range of CP-related health issues in his clinical research. He’s currently leading a project that would introduce handgrip strength as a measure of risk for chronic disease, and the Michigan team is also actively looking into better ways to assess the risk of fractures and renal disease (and screen for them, as well). Research aside, Dr. Hurvitz remains an active and passionate clinician. “One of the things I find in talking to adults with CP is that they just greatly appreciate the information, and they really feel like so few people are able to provide it.” Public knowledge is still catching up to the recent uptick in research, and so Dr. Hurvitz sees information dissemination and the growth of the CP health care provider/researcher community as a crucial factor in getting people with CP the treatment they need.

There is, of course, no magic treatment for CP, but Dr. Hurvitz’s outlook remains optimistic because of how the CP community and CP infrastructure have grown in recent years. “CPRN provides the tools to improve care, increase clinical research at significantly reduced cost (once the infrastructure is in place), improve clinical education…and more,” Dr. Hurvitz said.

Much of the research that Dr. Hurvitz and his peers have produced in recent years does suggest that CP is treatable, that physical interventions can dramatically increase quality of life and decrease the severity and frequency of secondary health issues. This is another reason for Dr. Hurvitz’s optimism. Recounting a patient whose life improved after being treated for a secondary health issue that was plaguing her, Dr. Hurvitz said, “I like to say that I can cure cerebral palsy—a little bit at a time. I can’t cure all of it, but I can cure some of it.” He feels that the more we know about CP, the more we can cure. The CP Research Network will continue to play a vital role in continued efforts to better understand CP.

MyCP Webinar: What is CPChecklist?

Unni G. Narayanan, MBBS, M.Sc., FRCS(C). A headshot of a broadly smiling man with short silver hair wearing a dark suit.

Dr. Unni Narayanan has created two leading outcome measures for children with ambulatory and non ambulatory cerebral palsy — the Gait Outcomes Assessment List (GOAL) and Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).

Dr. Unni Narayanan, a pediatric orthopedic surgeon and outcomes researcher, will share his vision for helping parents manage the health outcomes for children with severe (non-ambulatory) CP which is called CPCHECKlist©. The webinar will take place on Monday, May 16 at 8 PM ET and parents, caregivers or clinicians should register in advance to receive an invitation. Dr. Narayanan is the creator of the CPCHILD which is the leading outcome measure for health-related quality of life for children with severe CP.

Cerebral Palsy Co-morbidities and a Health Tech Evaluation Checklist (CPCHECKlist©) is a new parent-reported list of specific health items and co-morbidities, commonly experienced by children with severe cerebral palsy (CP) and CP-like conditions. In addition to reporting the presence and perceived severity of each health issue, the parent/caregiver also indicates which of these they wish to have addressed at any given clinical encounter. The CPCHECKList includes a section on the use of health-technologies. The CPCHECKlist is intended to serve as a companion health module of the CPCHILD questionnaire or as a stand-alone health/comorbidity index to guide clinical decision-making or to quantify the health status of a child with severe CP in a standardized, comprehensive way for research and clinical management.

Please join us to learn about this important new tool which will help parents manage the care of their children. Dr. Narayanan will be available for live Q&A directly following this presentation. MyCP Webinar Series registrants will receive an email with login details and a recording will be posted within 24 hours.

Headshot of Dr. Adam Ostendorf for his webinar on cerebral palsy and epilepsy

Update on Epilepsy and Cerebral Palsy

A headshot of Adam Ostendorf, M.D. A smiling man with short brown hair wearing a black suit and red tie.

Dr. Adam Ostendorf will present the CP Research Network findings about people with CP and epilepsy.

Our April MyCP webinar, next Tuesday, April 19, at 8 pm ET, will provide an overview of our initial findings about people with epilepsy and cerebral palsy (CP). The webinar will feature Adam Ostendorf, MD, a pediatric neurologist from Nationwide Children’s Hospital, who is the principal investigator of our epilepsy research within the network. Dr. Ostendorf has used the CPRN Registry and validated outcome measures, to learn more about the quality of life for people with CP and epilepsy.

Dr. Ostendorf was funded by the Pediatric Epilepsy Research Foundation in 2018 to add epilepsy specific support into the CPRN Registry. Since that time, Nationwide and other centers with the CP Research Network, have been gathering data about the experience of children with epilepsy and CP and examining differences in treatment and outcomes for kids with epilepsy and CP versus those without CP. Dr. Ostendorf will share his findings and how these can lead to important research to improve outcomes for children with epilepsy and CP. His findings have ramifications for children and adults alike.

If you are interested in joining the webinar, you can register on our MyCP Webinar Series page. People who have registered for our whole series will receive a link to the webinar in email a few days prior. If you cannot attend live, we will post the webinar on our YouTube channel where subscribers will receive a notification that it is posted.

Dr. Aravamuthan, a doctor specializing in cerebral palsy, with dark hair back over her white lab coast smiling.

New Publication on Cerebral Palsy

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair is wearing black rimmed glasses and a white lab coat.

Dr. Aravamuthan has championed physicians sharing an etiologic diagnosis with a diagnosis of cerebral palsy.

The Cerebral Palsy (CP) Research Network congratulates investigator Bhooma Aravamuthan, MD, DPhil and her co-authors for the publication of her CP Research Network study entitled “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.” The publication, released in the journal Developmental Medicine and Child Neurology in January 2022, describes the results of her survey of community members about the importance of understanding their possible etiologies (origins) of CP. The results of the study indicate that most community members with a diagnostic preference would want to know both their CP diagnosis and any information about their potential etiologic diagnoses.

Dr. Aravamuthan has been a strong advocate for shifting the practice of clinicians that make a CP diagnosis to include information that is important to families for numerous reasons. This article concludes that physicians should change practice to include all information about etiologic diagnoses with their CP diagnosis. This may include, in some situations, stating that the etiologies of a person’s CP are not known.

“Based on survey work we have done with clinicians, many tend to provide either a diagnosis of CP, or a diagnosis describing the etiology of CP, but not both,” said Dr. Aravamuthan, a pediatric movement disorders neurologist as Washington University in St. Louis. “But this study shows that families value the services and the sense of community of having both diagnoses when available.”

The red cover of Developmental Medicine and Children Neurology journal

The full journal article is available to subscribers to DMCN. MyCP members can click on the journal cover to go to the page to view the pre-approved version of the article.

We have made the article in its pre-approved state available to members of the MyCP community. As with many academic publications, this article is not available for free for the general public but the journal allows for authors to post pre-approved versions. MyCP members can find the article in our CPRN Private Archive. Interested community members can join MyCP for free to access this article and other services such as personalized resource recommendations and free adaptive fitness programs.

A bar chart shows the age bands and totals for people with cerebral palsy in our national registry.

Cerebral Palsy Registry Update

Headshot of Garey Noritz, M.D. Go to Gary Noritz’s profile

Dr. Noritz, a developmental pediatrician and internal medicine physician, will provide an overview of the current CPRN cerebral palsy registry.

Next Tuesday, March 29, at 8 pm ET, Garey Noritz, MD, the principal investigator of the Cerebral Palsy Research Network’s cerebral palsy registry, will present the latest findings from our registry for our next MyCP webinar. He is a developmental pediatrician and an internal medicine physician at Nationwide Children’s Hospital who treats children and adults with CP. The presentation is open to the public and characterizes the patient population – children through adults – that are captured in our national registry. Attendees will learn how the CP Research Network registry collects data and how that data is used to accelerate research. He will also share what we have learned about the more than 5,200 patients enrolled in the registry.

The Cerebral Palsy Research Network was founded out of a need identified by the National Institutes of Health (NIH) to establish a national registry for cerebral palsy (CP). Unlike countries with socialized medicine such as Australia or Sweden, surveillance of CP at a national level in the United States is exceedingly difficult and prohibitively expensive. The CP Research Network chose to build a “clinical” registry rather than a surveillance registry with the main difference being a focus on children and adults who were treated for CP rather than only whether they were born with CP. A clinical registry is an essential tool for planning research for CP, providing preliminary data to increase research funding success, and improving the treatments and outcomes for people with the condition.

MyCP webinar subscribers will automatically receive an email with the link to the webinar. If you are interested in joining this webinar or signing up for our series, register at: https://cprn.org/mycp-webinar-series/. If you cannot make the webinar, we will post a recording on our website and on our YouTube channel.

Dr. Kristie Bjornson in a bright green CPRN shirt and holding an orthotic.

CP Research Network Hires Scientific Director

Kristie Bjornson, PT, PhD. A smiling woman with blond hair, wearing a black vest over maroon turtleneck in a hospital hallway.

Kristie Bjornson, PT, PhD, MS, has been hired by the CP Research Network to be the Scientific Director.

The Cerebral Palsy Research Network hired Kristie Bjornson, PT, PhD, MS to lead its scientific direction. Dr. Bjornson, featured in our CP Stories in April 2021, is a leader in the field of research for cerebral palsy. In her new role, Dr. Bjornson will lead the network’s effort to pursue public funding from granting agencies such as the National Institutes of Health, the Patient-Centered Outcomes Research Institute and the National Institute on Disability Independent Living and Rehabilitation Research. Dr. Bjornson brings multi-center clinical trial experience for various interventions for CP (i.e. surgery, injections, orthoses, and rehabilitation).

“I’m excited to merge my experience in clinical research in cerebral palsy with the power of the network,” said Dr. Bjornson. “There are so many important to questions to answer for our community and the network is a highly efficient way to conduct this research.”

In addition to her role as Scientific Director, Dr. Bjornson will continue as a site principal investigator for Seattle Children’s Hospital (SCH) where her first-hand experience with our registry will be invaluable to our future research endeavors as she has real world experience with how the registry can be used to make clinical research more effective. Under her leadership, SCH has become a significant contributor to the richness of data in the network’s cerebral palsy registry as SCH has enrolled its entire CP population. Understanding and leveraging the registry to plan new research studies is a great strength that Dr. Bjornson brings to the network.

Webinar: Intrathecal Baclofen Pump Complications

Robert Bollo, MD, with a shaved head and a smile, in a dark suit, white shirt and red striped tie

Dr. Robert Bollo will present on the CP Research Network’s efforts to reduce the most common complication with intrathecal baclofen pumps.

Our next MyCP webinar is Thursday, January 27, at 8 PM ET and will be about our efforts to improve outcomes for intrathecal baclofen pumps (ITB). ITB pumps are commonly used to treat spasticity in people with cerebral palsy. Our featured speaker will be Robert Bollo, MD, a pediatric neurosurgeon from the University of Utah. The webinar and open Q&A with Dr. Bollo will last one hour.

Dr. Bollo will present an overview of the use of ITB pumps in the management of spasticity and common post-surgical complications with ITB pumps. He is leading a quality improvement (QI) initiative (study to improve outcomes) in the CP Research Network to monitor the most common complication of baclofen pumps – post surgical infections. ITB pump infections are common but estimates of infection rates in the literature vary widely with an average of 10%[refs] of all implantations.

Interested participants need to register in advance. Members of the MyCP webinar series will be emailed a link for this webinar. It is free and open to the public. It will also be recorded for future viewing.


References

  1. Fjelstad AB, Hommelstad J, Sorteberg A. Infections related to intrathecal baclofen therapy in children and adults: frequency and risk factors. J Neurosurg Pediatr. 2009 Nov;4(5):487-93. doi: 10.3171/2009.6.PEDS0921. PMID: 19877786.
  2. Tyack L, Copeland L, McCartney L, Waugh MC. Adverse events associated with paediatric intrathecal baclofen in Australia: 5 years of data collection. J Paediatr Child Health. 2021 Feb;57(2):258-262. doi: 10.1111/jpc.15194. Epub 2020 Sep 25. PMID: 32975337.
  3. Imerci A, Rogers KJ, Pargas C, Sees JP, Miller F. Identification of complications in paediatric cerebral palsy treated with intrathecal baclofen pump: a descriptive analysis of 15 years at one institution. J Child Orthop. 2019 Oct 1;13(5):529-535. doi: 10.1302/1863-2548.13.190112. PMID: 31695821; PMCID: PMC6808077.
  4. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  5. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  6. Spader HS, Bollo RJ, Bowers CA, Riva-Cambrin J. Risk factors for baclofen pump infection in children: a multivariate analysis. J Neurosurg Pediatr. 2016 Jun;17(6):756-62. doi: 10.3171/2015.11.PEDS15421. Epub 2016 Feb 26. PMID: 26919315.
  7. Haranhalli N, Anand D, Wisoff JH, Harter DH, Weiner HL, Blate M, Roth J. Intrathecal baclofen therapy: complication avoidance and management. Childs Nerv Syst. 2011 Mar;27(3):421-7. doi: 10.1007/s00381-010-1277-9. Epub 2010 Sep 18. PMID: 20853002.
  8. Motta F, Antonello CE. Analysis of complications in 430 consecutive pediatric patients treated with intrathecal baclofen therapy: 14-year experience. J Neurosurg Pediatr. 2014 Mar;13(3):301-6. doi: 10.3171/2013.11.PEDS13253. Epub 2014 Jan 3. Erratum in: J Neurosurg Pediatr. 2014 May;13(5):588. PMID: 24404968.
  9. Borowski A, Littleton AG, Borkhuu B, Presedo A, Shah S, Dabney KW, Lyons S, McMannus M, Miller F. Complications of intrathecal baclofen pump therapy in pediatric patients. J Pediatr Orthop. 2010 Jan-Feb;30(1):76-81. doi: 10.1097/BPO.0b013e3181c6b257. PMID: 20032747.
  10. Gooch JL, Oberg WA, Grams B, Ward LA, Walker ML. Complications of intrathecal baclofen pumps in children. Pediatr Neurosurg. 2003 Jul;39(1):1-6. doi: 10.1159/000070870. PMID: 12784068.