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

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Our Impact Grows: Sharing Our Findings

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The program cover the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine features skyline view of Chicago.

CP Research Network investigators will share our latest findings from our research and quality improvement at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine in Chicago this fall.

Providers, families and researchers for children with cerebral palsy (CP) will meet in Chicago, Illinois on September 10-13th for the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) annual meeting. This in-person meeting will bring together participants from around the world. The CP Research Network will demonstrate is growing impact on the field of CP care and research by sharing its findings in two mini-symposia, one morning session, four free paper presentations and three scientific posters. All these efforts are aimed at improving outcomes for people with CP through the implementation of evidence-based information and practices. We are thrilled to have the opportunity to share the results of our research, and to provide information about how the CP Research Network can be a catalyst for CP research.

The mini symposia will be two hours in total length including discussion.
Topics include:

  • Common Data Models and Research Data Sources: The practical realities of leveraging rich data sets to accelerate discovery – A multi-disciplinary team of presenters will be led by the CP Research Network CEO Paul Gross and include Michael Kruer, MD. They will discuss the sources of data available to researchers, the mechanism to access them and the practical realities of comparing and linking the data to generate new knowledge. The symposium will include speakers with real-world experience leveraging and linking these types of disparate but related data sources. It is appropriate for researchers focused on clinical and translational research.
  • Understanding the rationale behind practice variation in selective dorsal rhizotomy (SDR) moderated by Paul Gross, includes presenters from the disciplines that participate in SDR decision making including several CP Research Network investigators including Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS. The panel will discuss varied approaches to surgical decision making for SDR including overviews of national and international practice variation. They will discuss criteria involved in surgical spasticity decision making for SDR across several large tertiary care centers.

The morning seminar presentation is:

  • Accessing the CP Research Network Registries  for Community Research and Secondary Analyses featuring speakers Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque, MD, MS.  These speakers will discuss how researchers can access the data generated by the CP Research Network registries to perform secondary analyses that generate new knowledge about CP from existing data collection.  The speakers will cover the process for applying to access data and the types and quantity of data available in both the clinical and community registries.

Free papers and scientific posters feature a single investigator presenting findings based on research generated from our network. Free papers are eight minute oral presentations given to attendees and posters are displayed a specific times during the conference in which investigators are available to explain their research findings one on one with interested attendees.  In this format, topics and investigators include:

Free papers:

Scientific Posters:

These symposia, morning seminars, scientific posters and free papers all focus on improving care and advance research on the international stage. The broad reach the network’s work is clearly visible at this annual meeting and will attract new clinician researchers into our circle, with potential to widen our eventually impact.

Webinar: Making a Difference with MyCP

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A headshot of a smiling man with grey eyes and short dark hair. Paul Gross is the President & CEO of the CP Research Network.

CP Research Network CEO Paul Gross will explain how both community members and clinician researchers can get the most out of MyCP.

This month’s webinar turns the table on our usual “clinician scientist’s report on their study results” and focuses instead on how you can contribute to science as a member of the community or as a clinician.  Cerebral Palsy Research Network Chief Executive Officer, Paul Gross, will demonstrate the range of capabilities of and benefits from engaging in research through MyCP.  MyCP is a personalized, secure web platform for collaboration and contribution to research about the lived experience of having CP or caring for someone with CP.  The webinar is scheduled for Wednesday, March 29, at 8 pm ET via Zoom.

The primary way that MyCP allows community members to participate in research is through surveys hosted in a well-established academic research survey platform called REDCap.  Before community members can access surveys, we go through an informed consent process.  We will discuss the key areas of consent and the privacy and security of data to enable your participation in research.  Members of the research community will benefit from learning about how consumers participate in our research environment and how community members are informed of available studies.

MyCP includes personalized web resources, access to our award winning toolkit and other resources, and a private discussion forum.  The discussion forum provides a private and optionally anonymous platform for community members to interact with the physicians in our network to discuss research priorities, evidence-based treatments and to share important lived experiences.  The webinar will review how community members and clinicians can connect to improve outcomes for people with CP.

Please register and join us for this presentation and discussion so you can learn how MyCP can help you contribute to the conversation and the action to optimize the lifelong health and wellbeing of people with CP.  The webinar will also be recorded and posted to our website and YouTube.

The CP Research Network and CPARF logos side by side to indicate our new strategic partnership.

CP Research Network Announces Strategic Partnership with CPARF

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CPARF Executive Director Michael Pearlmutter and CP Research Network CEO Paul Gross pose in navy blazers with light blue shirts smiling broadly.

CPARF Executive Director Michael Pearlmutter joined CP Research Network CEO Paul Gross for a photo following a speech Gross gave at Columbia University in November 2022.

The Cerebral Palsy Research Network announced a strategic partnership with the CP Alliance Research Foundation (CPARF) to accelerate research, improve outcomes and expand educational efforts for the CP community. The CP Research Network will collaborate with CPARF to raise funds for CP research and CPARF will support the existing research efforts underway within the network. CPARF will also promote our toolkits and webinar series to members of its community. The partnership is effective immediately.

“We are excited to formalize this strategic partnership with our colleagues at CPARF with whom we have been working closely for several years,” said CP Research Network President and CEO Paul Gross. “This strategic partnership will help the CP Research Network engage more community members in research such as our adult study of wellbeing and pain, and expand the reach of our educational toolkits.”

The partnership will provide the CP Research Network with dedicated funds to support new studies that are aligned with the convergence of our research priorities with CPARF. CPARF scientific advisor, Dr. Yvonne Wu, a pediatric neurologist and epidemiologist from University of California San Francisco, will join the CP Research Network Steering Committee which oversees the network’s research initiatives. The two organizations will include one another in their events and research operations.

Researchers and community members wanting to learn more about the partnership can register to join Paul Gross and CPARF Executive Director Michael Pearlmutter for a webinar on Monday, February 13 at 6 pm ET. The webinar will also be recorded for viewing after the webinar.

Dr. Garey Noritz smiles with salt and pepper hair, a blue dress shirt and wire rim glasses.

American Academy of Pediatrics Updates Report on Cerebral Palsy

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A preview image of Dr. Garey Noritz leading to blog post ‘CP Stories: Dr. Garey Noritz’

Dr. Garey Noritz, who is the principal investigator for our CP registry, is an active member of the American Academy of Pediatrics and chairs of the AAP’s Council on Children with Disabilities.

The American Academy of Pediatrics partnered with the American Academy for Cerebral Palsy and Developmental Medicine to release an updated version of their clinical report on cerebral palsy entitled, “Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy.” The report is more comprehensive than the 2011 version, and that’s a good thing. Our understanding and knowledge of CP and its related conditions has grown exponentially since that time. Moreover, the updated report highlights some previously under recognized aspects of CP. This will help the CP community direct attention to the fact that CP isn’t just a childhood musculoskeletal disorder, but also includes other conditions which may need to be managed into adulthood. There is information on topics such as cerebral vision impairment (CVI), pulmonary conditions, hip dysplasia and swallowing issues among others.[1]

This revised version includes:

  1. Early detection of CP
  2. Transition to adulthood and transfer to adult medical care
  3. More information for pediatricians about providing general care for individuals with CP & collaborating with their specialists
  4. A list of family resources listed throughout the document that includes the CP Research Network and The CP Tool Kit.

When summarizing his perspective on the clinical report for cerebral palsy, Dr. Garey Noritz says, “We emphasize child and family strengths, family choice, and collaboration early on. Physicians also act as advocates who can help families navigate their relationships with the medical system, therapy providers, school, community groups and other resources.” -Dr. Garey Noritz, FAAP, FACP, lead author of the report and chairperson of the AAP Council on Children with Disabilities.[2]

The 2022 AAP clinical report is an outstanding resource for clinicians, and we hope that many of them will learn from it and refer to it when caring for their patients with CP. It is a modern and forward-thinking approach to managing the diversity and complexity of cerebral palsy. We have heard from many families and individuals who feel “lost at sea”, trying to access and coordinate their own care, perhaps this will help alleviate some of these circumstances.

References:
1https://publications.aap.org/pediatrics/article/150/6/e2022060055/190094/Providing-a-Primary-Care-Medical-Home-for-Children?autologincheck=redirected?nfToken=00000000-0000-0000-0000-000000000000

2https://www.aap.org/en/news-room/news-releases/aap/2022/major-health-organizations-release-guidance-on-identifying-treating-cerebral-palsy2/

Drs Gad and Carmel in blue collared shirts with Gad in a blue blazer and Carmel in a lab coat.

Spinal cord stimulation and spasticity

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Parag Gad, PhD, and CEO of SpineX smiles with an open collar blue shirt and dark blue blazer

Dr. Gad, CEO of SpineX, will present the preliminary data from their pilot study of noninvasive spinal cord stimulation in CP.

This month’s MyCP Webinar is on Monday, October 10 at 8 pm ET featuring a discussion about how noninvasive spinal cord stimulation can enable reductions in spasticity and improvement to gross motor skills. We have invited SpineX Chief Executive Parag Gad, PhD and CP Research Network Steering Committee member Jason Carmel, MD, PhD, to present a planned study of noninvasive spinal cord stimulation based on promising preliminary data developed by SpineX. Dr. Carmel, a pediatric neurologist who directs the Weinberg Family Cerebral Palsy Center at Columbia University, would lead one clinical site of this novel intervention for people with spasticity.

Although CP is largely due to brain injury, spinal cord circuits are altered by injury to the developing brain. Loss of motor and sensory connections alter the function of the spinal cord in CP and result in the spasticity which can impair the ability to walk, trunk control, other motor functions in addition to causing pain. Electrical stimulation has been shown to reduce spasticity and improves movement. Noninvasive spinal cord stimulation presents the potential to achieve these benefits with a wearable device. SpineX, a start-up company, has conducted a preliminary study with 16 people including people who can walk independently and wheelchair users.

Dr. Carmel organized a discussion at the CP Research Network’s annual research meeting to present the concept embodied in SpineX’s work for consideration in the network. Initially SpineX is seeking to conduct a trial using eight sites with one CP Research Network site at Columbia. If the trial is successful, it could be expanded to numerous CPRN centers.

Dr. Gad will present the evidence around spinal stimulation and explain the planned trial to the community and then be interviewed by Dr. Carmel to answer questions from the community about noninvasive spinal cord stimulation in CP and the trial. Community members interested in learning about this topic and technology can register for the webinar on cprn.org. The webinar will be recorded and posted to the network’s YouTube channel.

Three headshots of Cerebral Palsy researchers Aravamuthan, Kruer and Gross

CPRN Investigators To Speak at NIH Cerebral Palsy Workshop

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The banner for the NIH meeting on the state of cerebral palsy research with a graphic of a brainThe National Institutes of Health (NIH) are hosting a virtual public workshop on the state of cerebral palsy (CP) research starting next Wednesday, August 17 and August 18 that features three investigators from the CP Research Network. The meeting has been organized in response to Congressional requests to provide an update on the NIH Strategic Plan for Cerebral Palsy which was published in 2017 following two CP workshops held in 2014 and 2016. The organizers describe the purpose of the meeting as “to provide a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the Strategic Plan.” The CP Research Network encourages interested members of our community to register and join the online meeting.

The meeting is organized to follow the three priorities of the strategic plan starting with basic and translational research, and then clinical research and ending with workforce development. Drs Aravamuthan and Kruer, funded by NIH for their work in CP, will provide updates on their research progress on Day 1. Both are movement disorders neurologists with Dr. Aravamuthan specializing in dystonia in CP and Dr. Kruer on the genetic causes of CP. CP Research Network Chief Executive, Paul Gross, will speak on the use of CP Registries in research on Day 2. Each day will include between 40 and 80 minutes of discussion moderated by NIH staff. This meeting will include discussions of research progress and needs across the lifespan from neonatal development to adults with CP.

MyCP Webinar: What is CPChecklist?

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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.

Dr. Rimmer, with rimless glasses, in a brown coat, white shirt and red tie with Dr. Peterson in a dark blazer and blue shirt.

Webinar on Wellness for Adults with CP

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A white placed holder with 'wellness' written across it for the Webinar on Wellness for Adults with CP. The Cerebral Palsy Research Network will offer an informational webinar on wellness for adults with CP on February 23 at 5 pm ET. Earlier in February, we announced that we had partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer a free eight-week virtual course on mindfulness, exercise and nutrition (MENTOR) for people with CP and other disabilities. The webinar will feature NCHPAD Director James Rimmer, PhD and University of Michigan CP researcher Mark Peterson, PhD, discussing the benefits of exercise, mindfulness and nutrition. Several past participants from our pilot of MENTOR in April 2021 will join the webinar to answer questions as well.

“We are excited to share the details of our MENTOR program with members of the CP community,” said Dr. Rimmer. “Past participants recruited by the CP Research Network have helped us shape our wellness program for the CP community.”

Community members interested in learning more about MENTOR can register for the webinar on the MyCP Webinar Series page. If you are interested and cannot attend, you can register to receive an email notification when the webinar is completed and the recording is posted. Please join us.

If you already know about MENTOR and want to sign up, join MyCP or visit your profile and select “sign up for MENTOR”. You will receive an email with an invitation to the program.

Three photos show a woman in a wheelchair lifting weights, a nutritious meal and a peaceful day the beach

Free Mindfulness, Exercise, and Nutrition Course

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A cutting board and knife are laid out with healthy ingredients and a fry pan.

One of the core curriculum of MENTOR is nutrition which is of greater importance for people with cerebral palsy for their daily and long term health.

The Cerebral Palsy Research Network has partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to provide free virtual training classes on mindfulness, exercise and nutrition (MENTOR). NCHPAD is funded through a grant from the Centers for Disease Control to promote opportunities that are crucial to the health of people with a physical disability. The CP Research Network piloted the MENTOR program in April 2021 to provide feedback on the program for people with cerebral palsy (CP). NCHPAD was recently funded for the next five years and chose the CP Research Network as their partner for the CP community.

The MENTOR program is held over eight weeks for one hour a day. Classes meet virtually and have instructors from different disciplines to teach mindfulness, nutritional health and adaptive exercise. Some exercise equipment is provided free of charge. The classes offer optional add-on private coaching to tailor the content for the individual participating. The next class for people with CP will begin in April.

An informational webinar is being planned for February 23 at 4 pm ET with NCHPAD chief executive Dr. James Rimmer and past participants from the CP community. Adults with CP that are interested in learning more should visit our Cerebral Palsy Fitness page or send an email to mentor@cprn.org. Go to our MyCP webinar series page to sign up for the informational webinar.

Webinar: Intrathecal Baclofen Pump Complications

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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.