Stellar Year – Even Brighter Future
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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!
January 23, 2023 /in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Latest, Quality Improvement, Research, Wellbeing/by Paul
Forty clinician investigators, community members and advocates gathered in Chicago in May 2022 to advance the research of the network.
The year 2022 was stellar for the Cerebral Palsy Research Network on several fronts — the creation of numerous new studies and funding to support existing studies, such as one focused on adult wellbeing and pain. We have had invaluable engagement with the community through our 11 webinars and our in-person research meeting in May. Additionally, we have implemented measurable standardization of care at 12 of our hospital centers through our quality improvement (QI) program. Finally, our partnership with the National Center for Health, Physical Activity and Disability has brought wellness programming to the CP community, and our new partnership with the University of Pittsburgh has begun providing us with data coordinating services.
The change in our business model that we set in 2021 has blossomed into a critical funding source that will sustain our future research enterprise and strengthen our team and infrastructure. Our research sites are supporting the network not only by volunteering their time to contribute to the CP registry and our quality improvement processes, but also by paying a participation fee to support the personnel and other resources necessary to run a high quality research network. These fees have allowed us to hire Dr. Kristie Bjornson as our scientific director and Dr. Amy Bailes to lead our QI efforts. In addition, we have been able to retain a consulting firm that specializes in data collection embedded in the electronic medical record which is a unique aspect to our registry and care improvement model.
Our CP Research Network's clinical registry has grown enrollments by more than 50% in the past year.
Our research efforts are already seeing the benefits of these investments where our May in-person investigator meeting facilitated the creation of six new research studies for the network to advance in parallel with our nine existing studies. Our existing studies have generated six new manuscripts three of which were published in 2022 and more are coming for 2023. Registries grew to 7,500 patients in our clinical registry (up 50% from the prior year) and 2,058 in our Community Registry (up 41%). These registries are now amongst the largest CP registries in the world. Our genetics study is entering its fifth year and on track to enroll its target of 500 patient parent trios and will reveal many previously unknown factors in the cause of CP. That knowledge will in turn let us begin to personalize treatment in the future.
Our quality improvement efforts are aimed at advancing the quality of care for CP now. We have four active efforts that are showing sustained improvement at multiple centers for the assessment of pain in adults, the consistent diagnosis of dystonia in CP and the surveillance of hips, the top cause of pain in individuals with CP. We have increased the assessment of pain in adults from a baseline of 24% to more than 90% of the visits. Similarly, we have increased the consistency of dystonia diagnosis from a baseline of 42% to just shy of 60%. For hip surveillance, we have examined the consistency of hip surveillance at CPRN centers and we are now using our registry to help identify the patients that need frequent hip surveillance. These care efforts are being spread to additional centers and being written up as manuscripts for publication enabling the CP Research Network to influence the treatment of CP worldwide.
Our wellness programs are focused on keeping people with CP physically active because evidence shows us the importance of exercise for health of people with disabilities. The MENTOR program to which we educate and recruit adults in the CP community has been very positively received by the people who have participated.
Many times over the past few weeks, I have recognized the timeliness of MENTOR for me, given my life stage, CP journey, and the added impact posed by my other health conditions. The MENTOR program helps me see how to manage all of that by building/reinforcing skills around what I can control (e.g., mindset, level of activity, and nutrition). At the same time, the one-on-one opportunities to meet with staff have helped me refine my approach."
MENTOR graduate
While we are excited by what we have accomplished in 2022, we are anticipating an even more impactful 2023. We have a big announcement planned for the coming weeks which will further expand and accelerate our research and education efforts. We are already on track to submit six to eight new grants and publish several more manuscripts. We hope to complete recruitment for our adult study of wellbeing and pain while continuing to follow adult these participants over the long term to increase knowledge about aging with CP. We are planning to release three new toolkits to strengthen our educational offerings. And we hope improve wellbeing in the community with more fitness offerings.
Stay well, stay tuned and thanks for all of your support and engagement in our work!
https://cprn.org/wp-content/uploads/2023/01/CP-Stories.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2023-01-23 13:14:452023-01-23 13:14:45Stellar Year – Even Brighter Future
Update on the Genetics of Cerebral Palsy
January 4, 2023 /in Cerebral Palsy Registry, CPRN Studies, Latest, Research/by Paul
Dr. Sara Lewis, a post doctoral research fellow in Dr. Kruer's genetics lab at the University of Arizona, will present an update on Dr. Kruer's CP genetics study.
The Cerebral Palsy Research Network will kick off its 2023 MyCP Webinar Series next Wednesday, January 11, at 8 pm ET with an update on its study about the genetic causes of cerebral palsy. Dr. Sara Lewis, a Postdoctoral Research Associate at Phoenix Children's Hospital is working with Dr. Michael Kruer, to identify genetic causes of cerebral palsy and will present the preliminary findings from their research. She and Dr. Kruer, a pediatric neurologist specializing in movement disorders, will be available for questions and answers immediately following the presentation.
Dr. Lewis' webinar, "Cerebral palsy genetics: opportunities for both research and clinic" will address three main questions:
How are CP genetics studied and what are the key findings?
What can genetics tell us about the changes in the brain from CP?
What is the benefit of identifying genetic causes for a person with CP?
Dr. Lewis received her PhD in Neuroscience in 2015 with an emphasis in genetic neurodevelopmental disorders. Her work integrates human genetics with the fly model to study how genes leading to movement disorders change the brain. Fly models, and other animal models, allow researchers to conduct "pre-clinical" research, i.e., research that is has the potential to translate to humans. Her work also addresses the challenges of implementing genetic findings into the clinical environment. She is funded by the Cerebral Palsy Alliance Research Foundation (CPARF).
The MyCP Webinar Series is a monthly presentation of research findings for studies conducted by the CP Research Network. The series is free and open to all members of the CP community. The webinars use the Zoom meeting platform to allow participants to interact in real time with the researchers at the conclusion of the presentations. You can sign up for this webinar here. You can choose to sign up for the whole series and receive automated email invitations to each month's webinar.
https://cprn.org/wp-content/uploads/2023/01/Webinar-Post-Headers-8.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2023-01-04 08:54:072023-01-04 08:54:07Update on the Genetics of Cerebral Palsy
CEO Paul Gross Speaks at CP ADAPT Summit
December 15, 2022 /in Latest, News, Research/by Paul
CP Research Network CEO Paul Gross speaking to the 40 clinicians and researchers at the CP ADAPT Summit hosted at the Elsass Foundation in Copenhagen about his experiences building research networks.
The Cerebral Palsy Research Network CEO, Paul Gross, spoke this week at an international summit focused on planning an adaptive trials network for cerebral palsy (CP). Adaptive trials are studies that use unique statistical methodologies to conduct clinical trials that can dynamically change as information is learned from the ongoing trial. Adaptive designs have the potential to test multiple interventions at once which can, in turn, increase the speed of drug or device trials. CP ADAPT is a new international research network in the early planning phase. Mr. Gross has co-founded four research networks over the past 16 years and will be speaking about his key learnings from that experience.
"We are excited to hear Paul's perspective as both a parent of a child with CP and as a co-founder of numerous research networks," said Iona Novak, PhD, of the CP Alliance Research Institute in Australia. "We have a long-time collaborative relationship and look forward to planning this new network together."
Hosted and sponsored by the Elsass Foundation in Copenhagen, Denmark, the summit was organized by leaders in the CP research field including the CP Alliance's Iona Novak, PhD, Université Libre de Bruxelles' Bernard Dan, MD, Monash University's Michael Fahey, MD and University of Copenhagen's Jens Bo Nielsen, PhD (who also heads Research at the Elsass Foundation). Dr. Novak is received a grant from the CP Alliance to plan the adaptive trials network. Mr. Gross is a Co-Investigator on the grant. While participating as a community advocate, the potential to connect the CP Research Network to CP-ADAPT holds significant potential for more rapidly improving treatments in CP.
https://cprn.org/wp-content/uploads/2022/12/CEO-Paul-Gross-CP-ADAPT.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-12-15 05:30:042022-12-14 14:15:07CEO Paul Gross Speaks at CP ADAPT Summit
Consequences of Falls Study Results: MyCP Webinar
November 30, 2022 /in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Latest, Research/by Paul
On Wednesday, December 7 at 8 pm ET, Liz Boyer, PhD, will present the preliminary findings of her study entitled the "Consequences of Falls in Individuals with Cerebral Palsy." This presentation is based on data that was gathered in part in our MyCP Community Registry during the months of July and August 2022. This study seeks to close a knowledge gap to better estimate how the burden of falls differs over a lifespan and between gross motor ability in individuals diagnosed with CP.
Dr. Boyer is a Clinical Scientist at Gillette Children's Hospital in the Center for Gait and Motion Analysis and an adjunct assistant professor in the Department of Orthopedic Surgery at the University of Minnesota. She received her PhD in kinesiology with an emphasis in biomechanics and motor control. Dr. Boyer has been with Gillette since 2015 when she started as a post-doc.
The subjects that participated in this study ranged in age from five to 76 years old and were self-reported as level I – III (ambulatory) using the Gross Motor Function Classification System. More research is needed to identify characteristics of individuals who experience the greatest number of injurious falls including psychological and societal consequences even if falls are non-injurious.
People interested in watching the webinar can sign-up on the MyCP Webinar Series page. Dr. Boyer will be available for questions and answers with the attendees following her presentation of results. The webinar will also be recorded and posted on our YouTube channel.
https://cprn.org/wp-content/uploads/2022/11/Webinar-Post-Headers-7.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-11-30 13:03:332022-11-30 13:03:33Consequences of Falls Study Results: MyCP Webinar
CP Stories: Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil
November 8, 2022 /in Adults, Children and Families, CP Stories, Latest, Research/by Charlotte Ward
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 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 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."
https://cprn.org/wp-content/uploads/2022/11/CP-Stories.jpg 400 928 Charlotte Ward https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Charlotte Ward2022-11-08 11:46:062022-11-08 11:46:06CP Stories: Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil
CP Stories: Josephine and Her Family Hit the Ground Running. They Haven't Stopped Since.
October 28, 2022 /in CP Stories, Latest, Research/by Jeremy Klemin
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.
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.
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.
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.
https://cprn.org/wp-content/uploads/2022/10/josephine-cp-story.jpg 400 928 Jeremy Klemin https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Jeremy Klemin2022-10-28 11:48:542022-10-28 11:48:54CP Stories: Josephine and Her Family Hit the Ground Running. They Haven't Stopped Since.
The Top 10 Themes in Dystonia in CP Research
October 25, 2022 /in CPRN Studies, Latest, Research, Research CP/by Paul
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:
Develop new treatments for individuals with dystonia in CP,
Assess rehabilitation and psychological approaches to manage dystonia,
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.
https://cprn.org/wp-content/uploads/2022/10/mycp-webinar-top-10.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-10-25 06:00:402022-10-27 14:51:11The Top 10 Themes in Dystonia in CP Research
CPRN Orthopedic Registry Elements Facilitate Creation of NINDS Orthopedic CP CDEs
October 12, 2022 /in Latest, News, Research/by Paul
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.
https://cprn.org/wp-content/uploads/2022/10/generic-header.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-10-12 05:30:022022-11-02 21:36:33CPRN Orthopedic Registry Elements Facilitate Creation of NINDS Orthopedic CP CDEs
CPRN Partners with Pitt
October 7, 2022 /in Cerebral Palsy Registry, CPRN Studies, Latest, News, Research, Research CP/by Paul
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 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.
https://cprn.org/wp-content/uploads/2022/10/Webinar-Post-Headers-2.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-10-07 11:00:262022-10-07 11:00:26CPRN Partners with Pitt
Spinal cord stimulation and spasticity
October 3, 2022 /in Adults, Children and Families, Education, Latest, Research/by Paul
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.
https://cprn.org/wp-content/uploads/2022/10/Webinar-Post-Headers-6.jpg 400 928 Paul https://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.png Paul2022-10-03 06:30:232022-10-03 00:28:45Spinal cord stimulation and spasticity