Dr. Bhooma Aravamuthan reclines in a school bus, mask at her chin, she smiles warmly heading off to a CPRN investigator dinner in Chicago.

CP Stories: Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil

Caring for people with CP is a team sport.
Dr. Bhooma

Dr. Bhooma Aravamuthan says she fell in love with treating children with cerebral palsy (CP) as an undergrad.

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

Bhooma Aravamuthan, M.D., DPhil leads both the dystonia research efforts as well as the dystonia care improvements initiatives across the CP Research Network

Previously, she had been drawn to adult neurology. Her uncle had been diagnosed with Parkinson’s disease, and Aravamuthan, now Assistant Professor in the Division of Pediatric Neurology at Washington University in St. Louis, had been keen to pursue that field of medicine. But working with younger patients gave her new insight.

“My DPhil (PhD) was on studying deep brain stimulation targets for Parkinson’s disease in people and in rats,” she says. “When I started med school, I was convinced I would be an adult movement disorders physician conducting Parkinson’s disease research. Then I just fell in love with working with kids.”

The more she worked with children with CP, the more Aravamuthan saw a need for committed clinicians dedicated to enhancing the field of research.

“I felt I could best contribute there,” she says. “CP families are so savvy: they have so much to teach everyone they interact with. Yet, we paid them very little attention from a research perspective and had a limited amount to clinically offer them. I felt that, given my background, this was an area where I could make a difference.”

Ask Aravamuthan what she loves most about her job and she’ll reel off a long list. “I love the kids, I love the parents, I love my colleagues,” she says. “Caring for people with CP is a team sport – every day I feel like I’m part of a big team of people trying to achieve a shared goal.”

As a physician-scientist, the dynamic doctor spends much of her time in the lab advancing research into dystonia, a disorder that causes involuntary muscle contractions, abnormal postures, and involuntary muscle contractions and is prevalent in patients with CP.

“My lab uses machine learning techniques and targeted neural circuit manipulation in mice to understand what causes dystonia after neonatal brain injury,” she explains. “We try to develop techniques to optimize dystonia diagnosis in people with CP and apply these techniques to mouse models of disease.

“I love forming longitudinal relationships with kids and families and watching these kids grow and gain skills over time. I love providing families diagnostic clarity and letting them know about what treatments we have and how much we still have left to do.”

Her warmth for her patients was only enhanced when she became a mother herself. As well as leading the way in CP research, Aravamuthan is raising three young children – including twins!

“I think becoming a mother has helped me better relate to my families and given me a better understanding of how their specific goals and hopes for their child should drive my medical care and my research,” she says.

“Before I had kids, I asked my clinical mentor during Pediatrics training whether being a doctor made it easier to be a parent. She told me: “No, but being a parent made me a better doctor”. I think that’s true for me as well.

“My twins were born at 33 weeks and spent just over six weeks in the NICU. After that NICU experience, I spent a long time trying to reclaim what my perception of a “normal” motherhood was. But that doesn’t exist. I stopped trying to view my patients and families through that lens. Instead of helping them achieve what I assumed they wanted to achieve, I’d ask them about their goals and priorities.”

One such priority is the need for families to feel supported and heard as they transition away from childhood neurological care into adulthood.

“In medical school, you go on your pediatrics rotations and you see children with all kinds of chronic illness and then do your adult rotations and wonder, what happens to all those kids I saw last week when they grow up?” she says. “For CP, finding adult-trained providers willing to care for people with CP is tough. Because the lack of exposure to childhood-onset chronic illness is rampant even at the very beginning stages of clinical training, there is a lot of reticence to take on a population of people you don’t know much about. This is an issue that really needs to be fixed during training – there’s a huge pipeline problem.”

Dr. Bhooma, with long dark hair and glasses, leans into a table of her colleagues eating lunch at the 2019 CPRN investigators' meeting

Dr. Bhooma enjoys lunch with Drs Stevenson, Noritz, Glader, Nichols, Kruer and Rocque (counter clockwise respectively from her right) at the University of Michigan during our 2019 investigators meeting.

Day to day, Aravamuthan works closely with other key figures in CP clinical care with the shared desire to improve evidence-based medications, therapies, and surgical techniques through rigorous randomized-controlled trials and input from the CP community. She cites the CP Research Network as a key component of this goal as the network brings together a “supportive network of people interesting in improving the lives of people with CP across all disciplines.”

In 2020, she became the vice-chair of the Adults with Intellectual and Developmental Disabilities section of the AAN where she is working to educate adult neurologists about the need for ongoing care for people with CP.

As she continues her critical work, Aravamuthan is optimistic that with advocacy, research, and effort, the culture can be changed. “People realize that increased CP research across the lifespan, in particular in dystonia, is important,” she states. “Time will tell on the follow-through in terms of grant dollars and the clinical prioritization of CP clinics across the lifespan.

Advocacy is critical for what we do. A lot of the lack of focus on CP is because people still think it’s a “wastebasket” diagnosis. They don’t see the clinical impact of it, the faces of the people who have it, or the fascinating research questions in CP waiting to be addressed. I had no idea that advocacy would be a part of my job, but it’s such a gift to be able to introduce someone to what an important topic this is.”

CP Stories: Josephine and Her Family Hit the Ground Running. They Haven’t Stopped Since.

Eventually, Josephine would be released from the neonatal intensive care unit and sent home with her parents, Nina and Zach. But for the first seven weeks of her life, she fought to survive. Born postmature at 42 weeks, she experienced oxygen loss, resulting in Hypoxic Ischemic Encephalopathy (HIE), which commonly leads to cerebral palsy (CP). “Thinking back, sometimes I’m not sure how we survived the nonstop fussing, sleepless nights, and fear,” said Nina, Josephine’s mom.

From the moment Josephine got home, Nina and Zach hit the ground running. “We dove in hard and fast,” said Nina. They were fortunate to receive a formal diagnosis at eight months, which is relatively early for CP. The benefits of an early diagnosis are myriad, but it was most helpful in that it allowed Josephine to start an intensive therapy program and gain access to early intervention services. The doctors treating Josephine at the time did not mince words—the injury was likely permanent—but they did stress that intensive physical therapy could mitigate and even improve CP-related symptoms. Nina remembers one physical therapist, Gail Fennimore, as particularly helpful and encouraging: “Gail helped us learn about neuroplasticity and the ability to reestablish or improve movement patterns and muscle tone,” Nina explained. Now ten years old, Josephine’s therapy journey has been incredibly effective in improving both her day-to-day life and her future prospects.

A backlit photo of the Miller family in front of a lake when out camping.

Camping and hiking are a big part of the Miller family life and Josephine is active participant.

Josephine was also fortunate that her grandfather, Nina’s father, is a scientist and engineer, and was able to quickly acclimate himself with cutting-edge CP research. Learning about the latest research aimed to improve outcomes for children and adults with CP became a passion for the family. “We scoured every piece of information we could find about studies and emerging discoveries with the hope of identifying promising treatments,” explained Nina. Because of the time and care that Josephine’s family put into familiarizing themselves with CP research, her quality of life improved dramatically. Nina started connecting with other parents who had the same proactive mindset, and eventually, she met Michele Shusterman, Director and Co-Founder of CP Research Network. At the time, Shusterman was running CP NOW, which Nina described as a vital resource hub for families trying to make sense of the deluge of CP research that has been published in the last decade or so. “Meeting Michele, I felt like I could breathe again. I felt empowered to fight for Josephine and to just be her mom. I felt a sense of community that bolstered all of us,” she said.

And so Nina’s initial connection to the CP Research Network was a natural one, based on a desire to make sense of new information, share it, and forge bonds with the larger CP community. For Nina, this initial connection would spark a series of more formal relationships with CP organizations. She would go on to work at the Cerebral Palsy Alliance Research Foundation (CPARF) for two years, supporting their medical research grant writing program, partnership development, and helping organize the annual STEPtember fundraising event. “My two years at CPARF were some of the most inspiring and exciting of my life,” Nina said. These two years ended on a beautifully appropriate note: right around the time that Nina’s time with CPARF was coming to a natural close, Josephine had the opportunity to speak at an international summit of CP researchers interested in accelerating innovation for mobility- and speech-based adaptive technologies. At just five years old, Josephine spoke (using her eye gaze communication device) in front of a crowd of more than eighty scientists and engineers about her experience in kindergarten, and how frustratingly slow her current communication technology was. The conference—of which Josephine was, to be sure, a major part—would accelerate the development of a brain-computer interface for real-time speech.

A child with long brown hair sits in her wheel as her father adjusts her head.

Josephine, in her wheelchair, out shopping with her parents.

Josephine has just started fifth grade; she finished fourth grade with all A’s and B’s. She learns in a traditional classroom environment, with the help of a special educator who works with Josephine to adjust the classroom materials into a format that works for her. Despite the ups and downs of her eye gaze technology in the classroom, Josephine loves school and is particularly fond of reading. But that’s far from her only interest; Nina and Zach have made it a point to keep Josephine involved in extracurriculars. She routinely swims, does therapeutic horseback riding, and has also played in her local Miracle Baseball League. This year, she added two new seasonal activities to the list: Alpine skiing and waterskiing. The Millers are also avid outdoor adventurers and will not let mobility challenges rob Josephine of the many benefits of being immersed in nature. Whatever it takes to hike, bike, ski, and ride, they will always get her there.

There are, of course, highs and lows, but Josephine and her family are constantly looking forward. Nina has kept in touch with CP Research Network since she first met Michele Shusterman, and has remained involved by taking on small content development projects for the organization. She recently started a demanding position at Microsoft but hopes to commit a few hours a week to CP Research Network by the end of 2022.

Mom and daughter cuddle in a hammock strung between trees on a camping trip.

Summer and fall mean camping and other activities for Josephine and her family.

Now that we’re in fall, Josephine finds herself between the Alpine skiing and waterskiing seasons. Nevertheless, it remains one of her favorite times of the year: between an upcoming camping trip, her dad’s birthday, musical festivals, and her beloved brother’s soccer games,she has a full social calendar ahead. She’s also happy to be back in school again, surrounded by friends, classmates, and the larger community. Whatever the future brings, Josephine will be ready for it.

The Top 10 Themes in Dystonia in CP Research

Laura Gilbert, D.O. A broadly smiling woman with shoulder-length dark brown hair wearing a forest green shirt.

Dr. Laura Gilbert, winner of the Child Neurology Society 2021 Junior Investigator award, will present the top 10 research themes in dystonia in CP.

Next month’s MyCP webinar will feature Dr. Laura Gilbert, pediatric neurologist from Washington University who will be presenting the top 10 themes in dystonia in cerebral palsy (CP) research on Tuesday, November 1, at 8 pm ET. Dr. Gilbert will be joined by Dr. Bhooma Aravamuthan, leader of the CP Research Network’s dystonia in CP study group and quality improvement initiative. Dr. Aravamuthan was recognized earlier this month by the Child Neurology Society with the Dodge Award for her work as an outstanding young researcher.

Earlier this year Dr. Gilbert was the lead author on a paper released in the journal Neurology that included these 10 themes (an abbreviated list is below). In 2020-2021 she participated in the study group that led the CP Research Network’s community driven program called Research CP: Dystonia Edition. This team engaged community members and clinicians in a process that included educational information about dystonia and the generation and prioritization of research questions about dystonia in CP.

Dr. Gilbert’s manuscript and presentation won the CNS Young Investigator Award presented at their annual meeting in Boston in 2021. Her platform presentation reviewed both the process and the results of the community-centered research agenda.

Dystonia Top 3 (of 10) Priorities for Research as determined through Research CP Dystonia Edition:

  1. Develop new treatments for individuals with dystonia in CP,
  2. Assess rehabilitation and psychological approaches to manage dystonia,
  3. Comparative effectiveness of pharmacological and surgical treatments for dystonia (including
    evaluation of side effects, the person’s overall function and impact on individualized goals).

People interested in joining the webinar should register in advance on CPRN.org. MyCP webinar subscribers will be sent a link to the webinar several days in advance. The webinar will also be recorded for later posting to our YouTube channel.

The CP Research Network logo -- a support ribbon in shades of green for the letters C and P

CPRN Orthopedic Registry Elements Facilitate Creation of NINDS Orthopedic CP CDEs

The National Institute of Neurological Disorders and Stroke (NINDS) closed its public comment period on its latest Cerebral Palsy (CP) Common Data Elements (CDEs) and has now adopted a modified version of the CP Research Network’s orthopedic Registry Elements. These CDEs are intended to standardize the types of data collected for research in neurological conditions to foster data sharing and broader discovery. The CP Research Network developed data elements for orthopedic assessments and surgical procedures as part of the definition of its national registry in 2015. The adoption of these orthopedic data elements establishes a significant basis for research collaboration, as the CP Research Network registry is actively collecting data at more than fifteen sites in North America.

“The CP Research Network’s contribution to the NINDS’ CP CDEs is very important for accelerating neurological research,” said Dr. Walter Koroshetz, director of the NINDS. “Harmonizing data with large national registries like the CP Research Network’s enables more discovery and benefits the research community,” he continued.

The CP Research Network’s registry was developed in parallel with the NINDS’ CP CDEs, but it included data definitions for orthopedic and neurosurgical procedures common for CP from the outset. After the initial version of the NINDS’ CP CDEs were released, NINDS invited Paul Gross, president and CEO of the CP Research Network, to join the oversight committee for the CDEs. This collaboration has helped keep the CP Research Network Registry and the NINDS’ CP CDEs aligned to enable more research through the sharing of compatible data sets. The CP Research Network seeks to use the NINDS’ CP CDEs as a guideline for its registry development, but it also shares its work with NINDS.  The NINDS CP CDE team further organized and augmented the CP Research Network Orthopedic Registry Elements — changes that we plan to use to further revise our Registry Elements. The collaboration on the orthopedic elements allows this rich data definition to happen much more quickly than starting from a blank slate. The CPRN Registry Elements were initially developed and reviewed by a renowned set of orthopedic surgeons. Researchers that use the NINDS’ CP CDEs for orthopedics will be able to find additional collaborators within the CP Research Network that are already using these elements and may have significant preliminary data.

In the future, the CP Research Network intends to share its neurosurgical registry elements with NINDS. Because of the CP Research Network’s early traction in neurosurgery, its neurosurgical registry is well established and has captured a significant number of procedures since its launch in 2016. The Network looks forward to furthering its collaboration with NINDS in this important neurological aspect of CP research and interventions.

Blog post header featuring CPRN and University of Pittsburgh logos and a headshot of Dr. Wisniewski in a dark blue suit.

CPRN Partners with Pitt

The University of Pittsburgh seal in blue and gold.

The Epidemiology Data Center at the University of Pittsburgh will host the CP Research Network registries.

The Cerebral Palsy (CP) Research Network signed a strategic five-year research agreement with the University of Pittsburgh to provide the Data Coordinating Center (DCC) services for its growing research enterprise. Stephen Wisniewski, PhD, Professor, Co-Director of their Epidemiology Data Center, and Vice Provost for Budget and Analytics at the University of Pittsburgh, will become the DCC principal investigator for the CP Research Network effective October 1, 2022. The DCC provides essential research services for hosting our registries, designing our studies, and safeguarding our data. The partnership with the University of Pittsburgh will help the CP Research Network accelerate its mission to improve the lifelong health and wellness of people with CP and their families through high quality research.

Dr. Stephen Wisniewski in a blue suit, white shirt and blue tie with glasses, a full gray beard.

Dr. Stephen Wisniewski will lead Data Coordinating Center team at the University of Pittsburgh for the CP Research Network

“We are excited to be partners in research with the CP Research Network,” said Dr. Wisniewski. “Between their track record for engaging the extended CP community in research and our experience with multi-center trials, we believe we can help accelerate studies to improve outcomes in CP. We look forward to working closely with the CP Research Network to develop studies for the research questions that are most important to the CP community.”

The CP Research Network selected the University of Pittsburgh and Dr. Wisniewski as its new DCC partner to support its anticipated growth in research projects. Dr. Wisniewski’s track record with the ADAPT observational trial for traumatic brain injury and other successful publicly funded trials make him, his team and the University of Pittsburgh an ideal partner for the next phase of the CP Research Network’s research agenda. As the network nears the end of its second year of its five-year strategic plan, the number of studies under development to address its Research CP community-driven agenda has grown significantly. The CP Research Network’s registries, both central longitudinal research repositories capturing data about people with CP over multiple years, were recently highlighted during a workshop sponsored by the National Institutes of Health to report on and advance its strategic plan for cerebral palsy. The CP Research Network strategy calls for more publicly funded studies of CP for which Dr. Wisniewski and his DCC’s track record with NIH and other funders should increase the network’s success rate for grants and ultimately improving care for people with CP.

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

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.

Dr. Amy Bailes with shoulder length hair, glasses, a brown jacket and salmon colored open collared shirt.

CP Stories: Dr. Amy Bailes Advances CP Care

Amy F. Bailes, PT PhD is the Director of Physical Therapy Research at the Cincinnati Children’s Hospital Medical Center and an Associate Professor in the University of Cincinnati’s Department of Rehabilitation, Exercise, & Nutrition Sciences. Her clinical work focuses primarily on the care of children with CP, while her research involves how physical therapy services are utilized, the use of measurement tools to treat CP, and novel CP interventions.

Dr. Bailes' eight grade photo shows her smiling broadly with a blue and black checkered shirt over a yellow turtle neck.

Dr. Bailes early exposure to young child with cerebral palsy while babysitting influenced her ultimate career choice.

Dr. Bailes has worked as a pediatric physical therapist for the better part of four decades, but it was during her teenage years that she was first exposed to CP. After agreeing to babysit for a neighborhood family whom she didn’t know well, she realized after a few evenings that the baby, a nine-month-old boy, seemed delayed. After bringing it up with the family, they confirmed her guess: the baby had severe CP due to an infection during pregnancy. The young Amy Bailes didn’t end up babysitting for the family for long, but the chance encounter led her to pursue a bachelor’s degree in physical therapy from Indiana University.
Dr. Bailes sitting on a rock in Sedona AZ with her husband and two daughters and a beautiful red and green landscape behind her.

Dr. Bailes decided early to combine her love of children, physical activity with her fascination with the brain.

“I became very interested in how the brain worked and controlled movement,” said Dr. Bailes. “I learned that as a physical therapist, I could combine my interest in the brain with my love for physical activity and children.”

Throughout her career, she has seen the field of physical therapy evolve dramatically, especially for children with CP: “We’ve learned so much about caring for children with CP. It’s really changed. And that’s been pretty exciting.” Within pediatrics, Dr. Bailes’ experience has been expansive. She has worked in acute inpatient care, inpatient rehabilitation, and outpatient care, as well.

Dr. Bailes is also quite interested in physical therapy dosing, which covers the frequency, intensity, duration, and timing of administering physical therapy to patients. A recent study that she co-authored in Pediatric Physical Therapy entitled, “Documenting Physical Therapy Dose for Individuals with Cerebral Palsy: A Quality Improvement Initiative” describes how quality improvement activities were used to increase documentation of therapy dose in the patient’s electronic record of physical therapy. Detailed dose documentation is important to help us understand what treatments are effective and for whom. Dr. Bailes is actively working to spread standard documentation methods to other medical centers so that vital information can be collated and used to inform current practice.

Dr. Bailes is also passionate about developing closer relationships between clinicians, patients with CP, and their families, about “sharing information with families that can empower them to care for their child,” in her words. Part of why transparency and information-sharing is important to Dr. Bailes is because the field has not always prioritized openness. When the Gross Motor Function Classification System (GMFCS) came into use, for example, it was common for clinicians to withhold a children’s classification from their family, on the basis that it might alarm them. This always struck Dr. Bailes as counterproductive: “It’s important—especially with a chronic condition like cerebral palsy—for the individual and the family to understand the condition. This information doesn’t really belong to us. It belongs to them.”

This is one of the reasons that Dr. Bailes initially became involved with the CP Research Network: “I like that CPRN is about breaking down barriers between researchers and families/individuals with CP to improve care and outcomes,” she said. Dr. Bailes is passionate not only about breaking down the barriers between professionals and families, but also between professionals in adjacent fields. The logic is straightforward: when specialists actively work together, everyone benefits. Strict separation between disciplines can be a problem in CP—information and context is inevitably lost as the patient bounces from one specialist to another—but Dr. Bailes is optimistic that things are moving in the right direction. Part of her optimism stems from the power of groups like the American Academy for Cerebral Palsy and Developmental Medicine and their willingness to collaborate and treat from an interdisciplinary perspective.

Dr. Amy Bailes with shoulder length brown hair, glasses smiling with a while shirt and blue jacket.

Dr. Bailes is the CP Research Network Quality Improvement coach work with different disciplines to rapidly improve care for people with CP.

Likewise with CPRN and its power to facilitate connections: “I have learned so much. I have become a better person, clinician, and researcher because of these relationships,” Dr. Bailes said. Currently, she coaches four quality improvement teams within CPRN. These four teams, respectively, are focused on:
  1. improving care for adults,
  2. improving the assessment of dystonia,
  3. improving hip surveillance, and
  4. decreasing intrathecal baclofen pump infections.

When asked what she most valued about her work, Dr. Bailes was already looking toward the future: “One of the most rewarding parts of my work is planting seeds for the next generation of researchers and clinicians to carry the work forward.”

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.