Research presents cerebral palsy research updates, funding and funding opportunities, as well as new publications and the information offered within them, to keep the cerebral palsy community informed. Learn how you can be a part of the conversations by joining MyCP, an interactive cerebral palsy community forum, today!

CPRN Seeks to Study Improvements from Spasticity Interventions

Three year old boy with Spastic Cerebral Palsy
A three year old boy with spastic cerebral palsy.

The Cerebral Palsy Research Network (CPRN) submitted a significant multi-center grant application to the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), last month.  Functional Improvement Related from Spasticity Treatments (FIRST) has been in the planning stages for several years and exemplifies the type of study that CPRN was created to conduct.  FIRST, if funded, would engage 25 clinical centers across North America to look at children with ambulatory CP that receive botulinum toxin A (BTA) injections in their lower extremities to reduce spasticity and improve their walking.  FIRST seeks to compare children receiving serial BTA injections to those that go on to receive a selective dorsal rhizotomy – a neurosurgery that seeks to permanently reduce or remove spasticity.

Several CPRN investigators worked on the development of FIRST which was submitted by three co-principal investigators including Kristie Bjornson, PT, PhD from Seattle Children’s Hospital, Paul Gross from the University of Utah and Jeffrey Leonard, MD from Nationwide Children’s Hospital. FIRST plans to enroll 1624 subjects across the 25 sites. The study design is observational in nature (patients are not assigned to interventions) and leverages significant expertise at the University of Utah with “causal inference” methodologies.  This design is critical because it enables the testing of effectiveness of interventions in the real world setting of clinical practice without compromising the quality of the findings. The particular funding opportunity at NINDS to which this grant was submitted was specifically created to accommodate observational studies for conditions like CP where randomizing children to these interventions is not feasible.

The review process at NIH is thorough but also lengthy.  The study team does not expect a funding decision before the Fall of 2020.  But the process of assembling the study team, gathering preliminary data from the network and developing an application of this scale was a success in of itself.  It demonstrated the deep commitment of the CPRN site investigators to improve outcomes for people with CP.

2020 Vision

The Cerebral Palsy Research Network (CPRN) is approaching its fifth anniversary. Our strategic plan, which was finalized in early 2016, was intended to go through 2020. As we look back, we find that our strategic plan has been a “North Star”, and we have made great progress. 

We originally defined three strategic initiatives:

  1. Foster and conduct high-quality, multi-center multi-discipline quality initiatives and clinical research on cerebral palsy.
  2. Sustain a world-class multi-center and patient-centered clinical research organization.
  3. Translate knowledge broadly.

In 2019 we heard from numerous sites that they wanted to participate in our registry with a focus on conducting high quality research and quality improvement.  We added Benioff Children’s Hospital Oakland, Children’s Mercy Hospital in Kansas City and Joe DiMaggio Children’s Hospital in Hollywood Florida. These additional sites strengthen the network’s reach and further diversify our registry footprint.  We also published our CPRN Registry Elements data dictionary and data transfer specification to further standardize and accelerate our data collection for our CP registry. Enthusiasm to join the network continues to be strong with nine additional sites on track to join in the near future. 

To accomplish our second strategic initiative, we established a fiscal structure for CPRN to receive ongoing grant support and participation fees to sustain our work.  Our standard operating procedures outlined in a manual that describes how we function as a network, were put to work for the review of study applications and additional manuscripts.  And our Community Advisory Committee, which is essential to keeping our work patient-centered, helped shape our research strategy by guiding us to launch two important efforts in 2019 in health care transition for CP and dystonia in CP.

Our research and quality initiatives continue to grow and take shape.  Our annual investigator meeting was hosted by the University of Michigan in May 2019. It was a high energy and focused advancement of current and future research projects.  We launched our Community Registry and MyCerebralPalsy.org – a consumer facing web portal with a forum, news and opportunities to participate in research — with our first study of adults with cerebral palsy focused on well-being and pain. And this year our registry data led to several presentations and posters featured at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine.

Our network approved four new research concepts from investigators pursuing grant applications that leverage CPRN. These topics included:

  • two on spasticity management strategies,
  • therapy dosing, and
  • the role of body composition.

Our partner CP NOW has committed to funding research that advances the Research CP priorities and leverages the use of CPRN’s resources. This study focuses on the role of speech in participation for children with CP. 

We ended the year with our second publication entitled “The Role of Registries in Cerebral Palsy Research” and we received pre-approval from the National Institutes of Health to submit a multi-center $14M study of spasticity interventions in early 2020!

Our research initiatives and infrastructure will continue to advance in 2020 as we turn to planning the next phase of CPRN’s growth and impact.  Our third strategic initiative is the most exciting as it is where CPRN can begin to measure its impact on outcomes for people with CP as we seek to “translate knowledge broadly.”  Translating means not just publishing results but also putting the tools and techniques into practice in the hospital and community settings. We have established a very broad infrastructure that will allow network sites to implement evidence-based medicine and quality improvement initiatives in the CP clinics at CPRN centers.  The CPRN registry will allow us to measure implementation AND track patient outcomes so that we can begin to achieve our mission of improving outcomes for people with CP.

We enter 2020 excited about our vision for the future and energized to make it happen!

CPRN Selects Study on Speech and Participation in Cerebral Palsy

Kristen Allison, PhD, CCC-SLP
Kristen Allison, PhD, CCC-SLP

The Cerebral Palsy Research Network (CPRN) has selected Dr. Kristen Allison’s study entitled “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP)” for funding for its Research CP Request for Applications.  Kristen Allison, PhD, CCC-SLP, an Assistant Professor in the Department of Communication Sciences and Disorders at Northeastern University, was one of five applicants accepted for consideration for the Research CP Award to be funded by CP NOW.  CPRN is excited to work with Dr. Allison on the integration of her study into CPRN’s community registry hosted on MyCP, CPRN’s web portal for community engagement in research. Parents of children with CP interested in participating in this study should register for MyCP for future notification of the opportunity to participate in Dr. Allison’s study.  The area of study directly addresses one of key findings from Research CP – the importance of participation for people with CP.

CPRN’s Scientific Review Subcommittee (SRS), a multi-disciplinary group of clinical researchers, reviewed and ranked the applications on scientific merit and fit with the Research CP priorities.   Dr. Allison’s study concept and design was the top-ranked application from this set of diverse and important applications.  This review was the first performed by our SRS and a milestone in the advancement of CPRN’s infrastructure to conduct high quality research.  The SRS includes representatives with extensive experience in conducting reviews for the National Institutes of Health and brought this expertise and rigor to CPRN’s review process.  The SRS provided detailed feedback to each applicant thereby helping them to improve his or her research designs and future applications. CPRN appreciates the commitment of the applicants to advance research for people with CP, and the volunteer efforts of the SRS in reviewing these applications. 

Congratulations to Dr. Allison on her excellent research proposal and thanks to all who contributed to these applications and review process.  And thank you to our partner CP NOW for its tireless commitment to supporting both CPRN, the community and the funding of innovative research.

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 ‘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. 

A small preview image linking to blog post ‘Research CP Dystonia Edition Starts Tomorrow’

Research CP Dystonia Edition Starts Tomorrow

The Cerebral Palsy Research Network (CPRN) and CP NOW’s latest effort to generate a patient-centered research agenda for dystonia in cerebral palsy kicks off tomorrow, Wednesday, October 16th at 8 pm ET.  Join Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil, Community Advocate Melanie Brittingham and CPRN Chairman Paul Gross, to learn about this innovative program to help establish the most important research questions in dystonia in CP.  Register for the first webinar here.

Gross will kick-off the webinar with an overview of the Research CP process – the webinars, collaborative surveys and discussions – that will result in a list of research questions that the community finds most pressing in dystonia.  Brittingham, a board member of CP NOW and the mother of a child with dystonia in CP, will provide an overview of the community experience with dystonia.  And then Dr. Aravamuthan will lead the participants through the definition of dystonia in CP.  The webinar will be followed by a question and answer session.

Research CP Dystonia Edition is intended for people who have experienced dystonia in CP and clinician researchers who diagnose and treat the condition.  The program consists of a webinar series followed by discussions and collaboration on the most pressing research questions and a voting process involving both community members and clinicians.  The program will be conducted over several months using a series of online tools and forums to garner input and priorities from the extended community. 

CPRN Receives Five Study Applications

CPRN and CP NOW Foundation

CPRN and CP NOW – Partners in Research

The Cerebral Palsy Research Network (CPRN) received five complete applications in response to its Request for Applications that it launched in June 2019 with its partner in research, CP NOW. The study proposals (requesting up to $30,000) address concerns prioritized by the Research CP initiative which set a patient-centered research agenda for Cerebral Palsy (CP). The studies have been designed to leverage key aspects of CPRN such as its patient powered or clinical registry or its access to patients through it 25 participating centers.

The five studies address diverse areas of inquiry including:

  • predictors of social participation
  • outcomes in young adults with CP who are ambulatory
  • feasibility of adding body composition and strength to the CPRN registry
  • the influence of balance on functional outcomes
  • maximizing function and participation children who are non-ambulatory.

The RFA was open to non-CPRN investigators and includes two applications from external investigators. The applications will be reviewed and ranked by CPRN’s Scientific Review Subcommittee in October 2019 and the awardee(s) will be announced in November 2019.

CPRN appreciates CP NOW’s generous support for this inaugural funding opportunity for CPRN. We look forward to a continued partnership to address the Research CP agenda. CP NOW and CPRN are planning future community engagements to prioritize specific questions in CP research.

CPRN Turns Four

CPRN Logo ImageThe Cerebral Palsy Research Network (CPRN) turned four years old this summer. The leaders of CPRN came together as a group interested in collaborative cerebral palsy (CP) research with the submission of its first grant application in the summer of 2015. The leadership team initially set out to define a national CP registry but decided a much bolder effort was needed to change the course of CP outcomes for the better. We needed to create a platform to bring researchers and community members together to conduct ground-breaking, high quality research that would build an evidence base for improving treatments and standardize those treatments across a large number of hospitals across North America. As CPRN gears up to submit a large study to the National Institutes of Health this fall, we wanted to reflect on some of our major milestones in each of the last four years. The biggest milestones include:

    1. Defining a national clinical registry for CP in 2015. This effort was the work of more than 30 clinicians that treat people with CP collaborating to define the patient characteristics and interventions for CP and what outcomes were most important to measure.
    2. Launching of the CPRN Clinical Registry at our lead site Nationwide Children’s Hospital in April 2016 along with the commitment of 14 charter members sites to join the network and roll out the registry.
    3. Creating a patient centered research agenda for CP, an initiative entitled Research CP that engaged more than 200 people from the professional and patient community, in 2017. (This effort, funded by an award from the Patient Centered Research Outcomes Institute, was published in Developmental Medicine and Child Neurology in August of 2018).
    4. Funding in 2018 from the National Institutes of Health to support a CPRN study of the genetics of CP and from the Pediatric Epilepsy Research Foundation to add infrastructure to study epilepsy in CP patients.

These milestones are our biggest accomplishments since we started but the consistent advancement of parts of the network are key to the long-term vision and success. CPRN details its progress here on our blog and provides annual summaries of achievements each January since 2018 (2018 and 2019 years in review). While CPRN has made major progress in its first four years, our work is just beginning to enable changes outcomes for people with CP. We look forward to celebrating those changes with the community in years to come.

CP NOW Sponsors New RFA for CPRN

CP NOW, a non-profit focused on cerebral palsy education and research, is sponsoring a $30,000 Request for Applications (RFA) in conjunction with the Cerebral Palsy Research Network (CPRN). The RFA is open to investigators that are either members of CPRN or outside of the network.  CP NOW and CPRN seek to fund research that will advance key questions in the Research CP patient-centered research agenda using CPRN’s resources, e.g., sites, investigators, and CP registries.  Interested investigators can download the complete RFA here.

“We are very excited to partner with CP NOW in meeting their mission of optimizing the lifelong health, wellness and inclusion of people with cerebral palsy and their families” through the funding of patient-centered research,” said Paul Gross, Chairman and Founder of CPRN. “This RFA enables the international community of CP researchers to potentially leverage the power of CPRN and our registries to conduct research to address key questions prioritized by the community through Research CP.”

The CPRN RFA is modeled after the grant application used by the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).  The timing of the CPRN RFA, with applications due in mid-September, allows investigators that applied to AACPDM’s research funding opportunity to easily re-use their applications to apply for CPRN’s funding opportunity.  All of the relevant dates and details can be found in the RFA but the important dates to note include:

  1. Letter of Intent is due on July 1, 2019
  2. Invited applications are due on September 15, 2019.
  3. Funding decisions will be announced by November 1, 2019.

The answers to many investigator questions can be found on our CPRN and CP NOW RFA Frequently Asked Questions page.  Additional questions may be directed to info@cprn.org. This RFA is a significant milestone for CPRN because it provides the necessary funding to leverage our CP Registries for large public grant applications to answer key questions developed by the community.

“CP NOW is excited to present our second funding opportunity in partnership with CPRN. This collaboration builds upon the work both organizations began during our Research CP program. It reinforces our commitment to ensuring that we are supporting research that matters most to people with CP,” said Michele Shusterman, CP NOW President and Founder. “CPRN’s capacity to facilitate efficiency in finding answers to pressing community questions is aligned with CP NOW’s desire to integrate new information into the care and treatment of people with CP as quickly as possible. “

NIH Forum features CPRN’s Registry

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, moderated a panel of experts entitled “Big Data: How to Address Custom Needs” this past week at the National Institutes of Health (NIH).  The National Institute of Neurological Disorders and Stroke (NINDS), the largest funder of science of the brain and nervous system, held its annual Nonprofit Forum entitled “Progress through Partnership.”  The forum gathers leaders from patient advocacy organizations together with the directors of NINDS to increase understanding of the institute and enhance collaboration between NINDS staff and these nonprofits.

“Paul Gross has been an integral part of the success of the NINDS Nonprofit Forum for the past several years” said Nina Schor, MD, PhD, acting Director of NINDS.  “This year he took on the leadership role on a panel on Big Data featuring several distinguished speakers. He also led two successful breakout sessions for the more than 50 patient groups who were attending.”

The panel presented examples of the use of big data in a number of conditions including Alzheimer’s, cerebral palsy, Friedrich’s ataxia, hydrocephalus, Parkinson’s disease and ultra-rare diseases.  Panelists then gathered with attendees a breakout session to further brainstorm big data applications for attendees’ custom needs.  CPRN’s use of data gathered from electronic medical records systems and planned integration with genomic analyses provided attendees with a unique solution for making new discoveries. The breakout session delved into a vigorous discussion of patient registries of which many different approaches were represented in the room.  Ultimately, the NINDS Nonprofit Forum delivered on its promise of its title of progress through partnership.

Working with NIH is important for CPRN because it strengthens CPRN’s position for future grants because of our demonstrated innovation with our registry.