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 Tours University of Washington’s AMP Lab

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, visited the University of Washington’s new Amplify Movement and Performance (AMP) lab this past week. Gross joined in at a weekly AMP lab meeting with 15 engineering undergraduate students and post-doctoral students, two of three lab co-directors — Kat Steele, PhD. in mechanical engineering and Samuel Burden, PhD. in electrical engineering — and several clinicians from Seattle Children’s Rehabilitation Medicine and Physical Therapy.

Lab members test out new gait lab: Photo credit University of Washington

After a tour of the new research gait lab space, students and post-doctoral students did introductions and shared their research interests. Gross followed with a presentation of the founding and status of CPRN and the outcomes from its recent Research CP initiative. After, there was an engaged discussion about the opportunity in standardizing gait lab data for use with the CPRN registry, the value of the CPRN registry patient and intervention characteristics and the ability to link these with long-term patient reported outcomes. Some AMP lab members already collaborate with CPRN member site Gillette Specialty Healthcare for analyzing gait lab data. Seattle Children’s CPRN principal investigator, Kristie Bjornson, PhD. in Physical Therapy, provides a critical link between the AMP research lab and future collaboration with CPRN.

Research CP Workshop Materials Posted

Now you can attend the CP Workshop via a webinar!

The Cerebral Palsy Research Network (CPRN) and CP NOW are excited to offer you a webinar of the Research CP workshop that was held in June 2017 in Chicago! The workshop was the penultimate step in an initiative to create a patient-centered research agenda for cerebral palsy. The webinar contains a mix of audio and slides of more than seven hours from the workshop. Listeners can zero in on the final summation of the workshop or listen to all the proceedings at your own pace. CPRN and CP NOW plan to publish a paper detailing the results of the workshop in the coming months. Stay tuned!

The Research CP Workshop Day 1 audio/video:

The Research CP Workshop Day 2 audio/video:

Thanks for listening and participating in how you can be a part of the change in CP research. If you have any feedback or comments, we would love to hear what you have to share.

“For Our Voices to Count”

More than 45 people gathered in Chicago on June 16-17, 2017 as part of the Research CP Workshop to form a unique partnership that inspired optimism, hope and a vision of change for treatment and outcomes for people with cerebral palsy (CP). Twenty-four parents, caregivers and adults with CP joined with 23 doctors, therapists and researchers to discuss a prioritized research agenda for cerebral palsy.

A differentiator of the workshop is that it was inclusive of a broad range of people who have CP including those who use wheelchairs and are nonverbal plus parents and caretakers. Many traveled with assistance from all over the country to be there and it was the first time that they had had a chance to sit at the table with clinical researchers and be heard about what matters most to them about research.

“It was a great experience,” spelled Kathy Jo Pink on her Augmentative and Alternative Communication (AAC) Device, and she said what she learned she can take back to her housemates (who also have CP) about how the research will move forward.

Mother and personal attendant Diantha Swift added, “I came as a personal attendant for my 40-year-old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adult and children who have lived the life of cerebral palsy — for our voices to count is overwhelming.” Swift is an elementary school principal and mother of Amanda who has CP.

For community members, the opportunity to communicate their desires and difficulties with some of the most respected clinical researchers in the field created a tremendous sense of empowerment and hope for the future. And for the passionate clinicians and researchers, the interaction with such a diverse set of community members living with CP enabled new insights and optimism for their work and research.

Unni Narayanan, M.D., an orthopedic surgeon at SickKids and the president of American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) remarked, “I came here to better understand the perspective of the people that we are ultimately trying to help. I have learned a lot. I’m very optimistic that we can use this process and this partnership to answer many of the questions we have considered here.”

Research CP, an initiative to set a patient-centered research agenda for CP, was created as a collaboration of CPRN and CP NOW, and partially funded through a Eugene Washington PCORI award. After running a series of webinars to establish a common language for members of the CP community and providers to discuss research ideas, a group of more than 180 members of this extended community participated in a research priority setting process through a collaborative survey platform. A subset of that community was invited to the Research CP workshop in Chicago to further hone the research ideas into an agenda. The preliminary findings from the Research CP process are posted on CPRN and the Research CP team has begun the process of writing a manuscript to document the outcomes from the initiative.

Paul Gross, the founder of CPRN, summarized the importance of the Research CP Workshop, “Research CP has altered the perspective of some of the top CP researchers about what matters most to the CP community – and will fundamentally change the course of CP research. For those who care for people with CP or live with CP, their ‘voices’ really do count.”

Chicago Bound: Tune in to the Research CP Workshop this Friday!

In just a two days, more than 45 people from the cerebral palsy community including adults with CP, parents of children with CP, researchers and clinicians and CP community advocates, will convene on Friday, June 16, 2017 in Chicago, after months of engagement organized by CPRN and CP NOW and the Research CP planning team. This workshop is the first time that doctors and members of the CP community will be working together to set a comprehensive clinical research agenda for CP. And you can be a part of it by tuning in.

Audio: (641) 552-9473 Access Code: 430970#
Screen share:

We are excited to announce that you can tune in to the workshop broadcast via webinar with audio and slideshow. The broad goal of the workshop is to prioritize CP research from varied perspectives in the community.

The goals of the workshop will be:

  • Synthesizing the top research ideas from Codigital to be “research concepts”, i.e., with enough clarity that researchers will be able generate meaningful questions and create hypotheses that can be used for studies and grant applications.
  • Using “multi-voting” we will prioritize the resulting research concepts.
  • Conveying how the research and clinical community will leverage this work.

The agenda is:

Friday 8:30 am – 12:30 pm CT, 4:00 pm – 5:00 pm CT and Saturday, 8:30 am – 2 pm CT

These are the top three research ideas that were generated by the survey process. The top 20 will be points of discussion:

  1. What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan?
  2. Research the issues around aging with CP, to understand not only how to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments such as pain, fatigue, and functional loss.
  3. Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities?

We are excited to meet and greet everyone in Chicago and to prioritize a CP clinical research agenda with the input from the full community. Our hope is that the prioritized research agenda will improve outcomes for those with CP in the future.

Count Down to the Research CP Workshop!

In just a little over two weeks, CPRN and CP NOW will kick off the Research CP Workshop after months of planning and collaborating.  Here is a snapshot to get you up to date:

  • There are a total of 48 attendees registered including support and planning staff.  The group is split evenly among members of the community and clinician/researchers.
  • There will be a conference call/screen share option to attend remotely in place of live streaming which was too cost prohibitive.
  • After culling the 400 ideas generated from the surveys and voting, there emerged a top 50 list in each of the two main areas of:
    1. Important research questions
    2. Most important improvements to care and treatment.

From this process, similar themes were discovered. Some of the most common general themes include (in alphabetical order):

  • Advocacy and Education (working to change knowledge of professionals, patients and caregivers or change policy that affect a broad group of people such as access to care, facilities or equipment)
  • Best Practices (guideline development, “algorithms” for how to treat different types of CP, etc.)
  • Comparative Effectiveness Research (of interventions including surgeries, medications, therapies, orthotics, therapy dosages, etc.)
  • Complementary and Alternative Medicine
  • Exercise and Physical Activity
  • Increasing Independence
  • Measurement Validation and Development
  • Mental Health
  • Understanding Aging

We plan to put this list of themes with their underlying questions out for another round of voting to further prioritize the research agenda.  We will not use Codigital for this step but a more traditional survey platform.  The goal will be to understand the priority of these higher level themes of research questions and care/treatment improvements.  This next step should allow us to arrive at the workshop with the potential to make the most progress on setting a patient-centered research agenda.

Thanks for being engaged in Research CP.  We look forward to what the next steps and workshop will do to bring our process to a close with the ultimate goal of improving the lives of those who have cerebral palsy.

CPRN Founder Receives University of Utah Faculty Appointment

Paul H. Gross

Paul H. Gross

The Cerebral Palsy Research Network (CPRN) Founder and Chairman, Paul Gross, has been appointed to the faculty of the University of Utah’s (U of U) Health Services Innovation and Research (HSIR) Division of the Department of Population Health Sciences within the U of U School of Medicine. His appointment is as an Adjunct Assistant Professor. Gross has had a long-standing relationship with the University of Utah since he co-founded the Hydrocephalus Clinical Research Network with U of U neurosurgeon John Kestle, M.D., in 2006.

“Our mission in HSIR is to bridge from research to practice. Working with thinkers like Paul is essential to our mission,” said University of Utah’s Rachel Hess, MD, HSIR Division Chief. “Moving knowledge forward in dynamic ways that are not always typical in academia is critical to future health. Paul helps us keep that mission at the forefront.”

The founding of CPRN established a deep working relationship among faculty members in HSIR and Gross. CPRN leaders Susan Horn, Ph.D. and Jacob Kean, Ph.D., faculty at University of Utah, saw the opportunity to expand research capabilities by partnering more closely with him.

Paul Gross has a track record in creating clinical research infrastructure with business leadership skills that accelerate the pace of biomedical research. As faculty of the University of Utah, Gross will have broad access to the rich and diverse set of people, knowledge, and infrastructure to facilitate high-quality research to improve outcomes for people impacted by neurological disorders.

Established in 2014, HSIR does research that affects virtually everyone every day. The HSIR lab is clinical healthcare. The goal is that every patient has access to care that is timely, personalized and safe. The University of Utah was established in 1850 and ranks among the top 50 U.S. universities by total research expenditures with over $486 million spent in 2014 per the National Science Foundation.

CPRN Registry Data Collection is Expanding

The Cerebral Palsy Research Network (CPRN) trained two sites on Wednesday to begin data entry in the CPRN registry. Gillette Children’s Specialty Care and Seattle Children’s Hospital (SCH) are two of the 13 CPRN sites that have received approval from their institutional review board (IRB) to begin data collection for the CPRN Registry. While others sites are planning to enter CPRN Registry data directly into their electronic medical records (EMR) system, Gillette and SCH are getting an earlier start with a web-based collection system that CPRN offers. At the completion of this week’s training, five sites will be up and running with the CPRN Registry. These sites represent a demographically diverse population in the United States including:

  • Children’s of Alabama, Birmingham, AL
  • Gillette Children’s Specialty Care in St. Paul, MN
  • Nationwide Children’s Hospital, Columbus OH
  • Primary Children’s Hospital in Salt Lake City, UT
  • Seattle Children’s Hospital, Seattle, WA.

Other sites with IRB approval are actively implementing the CPRN Registry in their EMR but only our lead CPRN Registry site, Nationwide Children’s, is collecting data through that method today. The data collection from these additional sites begins to shift the mix of the CPRN Registry to a truly multi-center registry which is critical to the quality of our future research and our vision of a national cerebral palsy registry.

CPRN Adds Pediatric Panel to Community Advisory Committee

The Cerebral Palsy Research Network (CPRN) is pleased to announce the addition of the Pediatric Panel to the Community Advisory Committee. We welcome our new members comprised of parents of children with CP and teens and young adults with CP. We appreciate their time and commitment to ensuring that the pediatric CP community perspective is evident in the following ways in CPRN:

  1. Represent viewpoint of the CP pediatric community through parent and caregiver voices in steering the direction of CPRN.
  2. Reviewing the strategy and prioritizing the research.
  3. Participating as investigators or advisors in CPRN studies.

Collectively they represent a wide range of cerebral palsy diagnoses in type and degree of involvement. Many are advocates in the CP community, business leaders and health care practitioners so they bring a wealth of experience and knowledge.

In February, 2017 many of the new members participated in a Pediatric Panel Kick Off webinar hosted by Paul Gross, engaged in Research CP webinars and research prioritization survey and several will be attending the Research CP Workshop in Chicago.

We look forward to their insight and working together to advance research for cerebral palsy. Many thanks to Michele Shusterman of CP NOW for organizing and managing the panel.

Please welcome:

  • Melanie Brittingham
  • Jennifer Degillo
  • Lisa Diller
  • Lizette Dunay
  • Cathryn Gray
  • Chantal Holt
  • Kaysee Hyatt
  • Marquise Lane
  • Shantiah Norfleet
  • Michelle Parello
  • Wendy Sullivan
  • Liza and Timothy Weathersby
  • Christina Youngblood

Interested in being involved in CPRN’s Community Advisory Committee? Email our Community Engagement Director, Michele Shusterman, and follow us on and/or on Facebook at CPRN.

CP Research Workshop Attendees Selected

The Cerebral Palsy Research Network (CPRN), in partnership with CP NOW, will convene a 40-person workshop in Chicago, IL in June, 2017 as part of the the Research CP initiative to set a patient-centered research agenda for cerebral palsy (CP). Twenty-two members of the CP community will represent a broad swath of people living with CP including:

  • Seven adults with CP
  • Four caregivers of adults with CP
  • and 11 parents of children with CP.

The attendees were selected from 43 applicants who sought to participate in the meeting after engaging with more than 150 community members involved in the Research CP educational series and surveys. Joining the CP community participants will be twenty-one members of the CP clinical research including:

  • Three developmental pediatricians
  • Two neurologists
  • Two neurosurgeons
  • Two orthopedic surgeons
  • Three physical medicine and rehabilitation doctors
  • Four therapists (Three PTs and one OT)
  • Five Ph.D., researchers including expertise in biostatistics, neuroscience, measurement and assessment, physical therapy, rehabilitation science, speech and language, and kinesiology.

These professional attendees represent some of the most committed and accomplished clinician researchers who treat people with CP. Most of the professional attendees are also members of the American Academy for Cerebral Palsy and Developmental Medicine which is supporting the Research CP initiative.

The Research CP workshop, which will be streamed to the public, will seek to synthesize the more than 300 research ideas that were generated by CP professionals and community members in March, 2017. The synthesis will result in the ultimate goal of a prioritized patient-centered research agenda for CP which will be published broadly. The meeting will be professionally facilitated by an expert in medical research prioritization processes. The Research CP workshop is partially funded through a Eugene Washington PCORI award.

CPRN PI to Study Genetics of Cerebral Palsy

Michael Kruer, M.D.

Michael Kruer, M.D.

The Cerebral Palsy Research Network (CPRN) is pleased to announce that Michael Kruer, M.D., a pediatric neurologist at Phoenix Children’s Hospital, is joining the CPRN investigator team. Dr. Kruer specializes in the genetics of cerebral palsy and recently joined the International Cerebral Palsy Genomics Consortium. Pediatric neurosurgeon Taryn Bragg, M.D., has been named as the alternate principal investigator from Phoenix Children’s Hospital. Phoenix Children’s Hospital has been a “fast follower” of the CPRN registry and has demonstrated significant commitment to our research objectives. Read more