Thanks to Drew Beamer and Unsplash for this shot of a crystal ball in an extended hand with a view of the horizon

Stellar Year – Even Brighter Future

Dr. Ed Hurvitz, holds a mic while speaking to CPRN investigators seated classroom style at our Chicago meeting

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.

A colored bar graph shows sites in the CP Research Network and the number of patients they have enrolled in the CP registry.

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.
Marji
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!

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.

Webinar: Intrathecal Baclofen Pump Complications

Robert Bollo, MD, with a shaved head and a smile, in a dark suit, white shirt and red striped tie

Dr. Robert Bollo will present on the CP Research Network’s efforts to reduce the most common complication with intrathecal baclofen pumps.

Our next MyCP webinar is Thursday, January 27, at 8 PM ET and will be about our efforts to improve outcomes for intrathecal baclofen pumps (ITB). ITB pumps are commonly used to treat spasticity in people with cerebral palsy. Our featured speaker will be Robert Bollo, MD, a pediatric neurosurgeon from the University of Utah. The webinar and open Q&A with Dr. Bollo will last one hour.

Dr. Bollo will present an overview of the use of ITB pumps in the management of spasticity and common post-surgical complications with ITB pumps. He is leading a quality improvement (QI) initiative (study to improve outcomes) in the CP Research Network to monitor the most common complication of baclofen pumps – post surgical infections. ITB pump infections are common but estimates of infection rates in the literature vary widely with an average of 10%[refs] of all implantations.

Interested participants need to register in advance. Members of the MyCP webinar series will be emailed a link for this webinar. It is free and open to the public. It will also be recorded for future viewing.


References

  1. Fjelstad AB, Hommelstad J, Sorteberg A. Infections related to intrathecal baclofen therapy in children and adults: frequency and risk factors. J Neurosurg Pediatr. 2009 Nov;4(5):487-93. doi: 10.3171/2009.6.PEDS0921. PMID: 19877786.
  2. Tyack L, Copeland L, McCartney L, Waugh MC. Adverse events associated with paediatric intrathecal baclofen in Australia: 5 years of data collection. J Paediatr Child Health. 2021 Feb;57(2):258-262. doi: 10.1111/jpc.15194. Epub 2020 Sep 25. PMID: 32975337.
  3. Imerci A, Rogers KJ, Pargas C, Sees JP, Miller F. Identification of complications in paediatric cerebral palsy treated with intrathecal baclofen pump: a descriptive analysis of 15 years at one institution. J Child Orthop. 2019 Oct 1;13(5):529-535. doi: 10.1302/1863-2548.13.190112. PMID: 31695821; PMCID: PMC6808077.
  4. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  5. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  6. Spader HS, Bollo RJ, Bowers CA, Riva-Cambrin J. Risk factors for baclofen pump infection in children: a multivariate analysis. J Neurosurg Pediatr. 2016 Jun;17(6):756-62. doi: 10.3171/2015.11.PEDS15421. Epub 2016 Feb 26. PMID: 26919315.
  7. Haranhalli N, Anand D, Wisoff JH, Harter DH, Weiner HL, Blate M, Roth J. Intrathecal baclofen therapy: complication avoidance and management. Childs Nerv Syst. 2011 Mar;27(3):421-7. doi: 10.1007/s00381-010-1277-9. Epub 2010 Sep 18. PMID: 20853002.
  8. Motta F, Antonello CE. Analysis of complications in 430 consecutive pediatric patients treated with intrathecal baclofen therapy: 14-year experience. J Neurosurg Pediatr. 2014 Mar;13(3):301-6. doi: 10.3171/2013.11.PEDS13253. Epub 2014 Jan 3. Erratum in: J Neurosurg Pediatr. 2014 May;13(5):588. PMID: 24404968.
  9. Borowski A, Littleton AG, Borkhuu B, Presedo A, Shah S, Dabney KW, Lyons S, McMannus M, Miller F. Complications of intrathecal baclofen pump therapy in pediatric patients. J Pediatr Orthop. 2010 Jan-Feb;30(1):76-81. doi: 10.1097/BPO.0b013e3181c6b257. PMID: 20032747.
  10. Gooch JL, Oberg WA, Grams B, Ward LA, Walker ML. Complications of intrathecal baclofen pumps in children. Pediatr Neurosurg. 2003 Jul;39(1):1-6. doi: 10.1159/000070870. PMID: 12784068.
Happy New Year 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At the Cerebral Palsy Research Network, we have a lot to be thankful for.  You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022.  With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow).  Thank you to all who contributed and helped to spread the word!

2021 in Review

Last year was transformative in numerous ways for the CP Research Network.  We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:

 

Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now.  A few highlights include:

What’s new for 2022?

We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.

There are lots of ways to stay engaged with us.

Please consider one of these:

All the best to you and the entire CP community for 2022!

 

 

 

 

Dr. Bhooma Aravamuthan, pictured in a white lab coat and dark rimmed glasses, will speak about dystonia in CP

Update on Dystonia in Cerebral Palsy

On Thursday, December 9, at 8 pm ET, the CP Research Network will hold its final MyCP webinar for 2021 to provide an update on our work in dystonia in cerebral palsy. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist at St. Louis Children’s Hospital, and a leader in the network, will present an update on our progress in this important area of research and care.

In 2019, the Cerebral Palsy (CP) Research Network started an effort to build a community centered research agenda for dystonia in CP. Dr. Darcy Fehlings had found that dystonia was significantly under diagnosed in the CP population and that as much as 80% of the people with CP had some degree of dystonia in addition to spasticity.[ref] The presence of dystonia can be challenging and painful for people and often requires different approaches to treatment. Parents expressed frustration in getting an accurate diagnosis that allowed their children get relief from these symptoms. The CP Research Network developed Research CP Dystonia Edition to engage the extended community – caregivers, people with CP, and clinicians – in a dialogue about the most pressing issues needing research in dystonia in CP.

Dr. Aravamuthan leads our quality improvement effort focused on increasing practitioner awareness of dystonia screening for every person with CP. She will describe how this effort addresses a key priority set forth in Research CP Dystonia Edition. She will also describe research concepts that she is developing to directly engage the community to advance dystonia diagnosis. Please join us for the webinar next Thursday evening by signing up at https://cprn.org/mycp-webinar-series/.

The MyCP webinar on assessing pain in adults with CP will be delivered by Drs Gannotti and Noritz

Assessing Pain for Adults with Cerebral Palsy

Drs. Gannotti and Noritz, dressed in business attire, at an informal meeting in Austin, TX

Drs Gannotti and Noritz, clinicians who treat both children and adults, will present on assessing pain in adults with cerebral palsy (CP).

This month’s MyCP webinar will focus on the CP Research Network’s Adult Care quality improvement (QI) initiative at 8 pm ET on Monday, October 25. CP Research Network leaders Garey Noritz, MD and Mary Gannotti, PT, PhD, will provide an overview of this initiative which is focused on pain for adults with CP. Quality improvement, like clinical research, is aimed at improving health outcomes but using a different methodology to achieve those outcomes. QI is exciting because it can change health outcomes much more rapidly than clinical research. The webinar will include a brief overview of how QI enables these faster changes in outcomes.

Our Adult Care QI initiative includes clinicians that treat adults with CP and community advocates working together with a global aim of improving the care that adults with CP receive. Supported by data from our Adult Wellbeing and Chronic Pain study, this initiative has narrowed it first efforts to uniformly assess pain in each clinic visit for adults with CP. In addition to support from our ongoing study, a recent MyCP focus group with several adults with CP helped shape initial assessments of pain used by the participating clinicians.

Dr. Gannotti is a professor of physical therapy at the University of Hartford and a PT affiliated with Shriners’ Hospital of Springfield and co-leads the adult study group of the CP Research Network. Dr. Noritz is the Director of the Complex Care program at Nationwide Children’s Hospital and an adult internist who treats adults with CP. Doctors Gannotti and Noritz will present for approximately 25 minutes before opening the webinar to questions and answers. Community members who wish to participate in the webinar can sign up on CPRN or to receive an email with a link to the recording after the webinar.

A green page banner with a headshot of Dr. Wade Shrader. A smiling man with short brown hair and beard wearing a dark suit.

Webinar on Hip Surveillance and CP

Dr. Wade Shrader of Nemours/AI duPoint, smiling in a blue suit, is an orthopedic surgeon who leads the CP program at Nemours

Dr. Shrader, an orthopedic surgeon, leads the hip surveillance initiative for the CP Research Network.

After taking a break during the last month of summer, our MyCP webinar series will resume on Wednesday, September 29 at 8 pm ET with a presentation on our hip research program. Hip pain is the most frequent cause of pain in children with cerebral palsy and can cause problems with mobility and range of motion. We have begun a hip surveillance program at our the CP Research Network centers to proactively address this issue—a very challenging task to undertake. Our upcoming webinar will feature Dr. Wade Shrader, a pediatric orthopedic surgeon and Division Chief of Cerebral Palsy at Nemours/AI duPont Hospital in Wilmington, DE who leads this effort for the network. He is also the parent of four children, two of whom are adults with CP.

In order to protect the hips of children with CP, the American Academy for Cerebral Palsy and Development Medicine (AACPDM) released an updated “care pathway” recommending the frequency and techniques for monitoring the hip health of children with CP in June 2018. Care pathways combine the latest evidence-based medicine and expert opinion to provide guidance on how to treat complex conditions. Dr. Shrader will discuss the anatomy of childrens’ hips, the impact of CP, the importance of monitoring hips, and how parents and caregivers can advocate for their child’s hip health.

“I know first-hand as a Dad how tough recovery from hip reconstruction surgery can be, “ said Dr. Shrader. “I’m looking forward to talking with the CPRN community about hip issues in Cerebral Palsy, and to give my perspective as both a pediatric orthopedic surgeon and a family member.”

Community members and clinicians interested in the webinar can sign up on cprn.org. MyCP members and series registrants will receive the Zoom link automatically prior to the webinar. Join us!

Small preview image of a spider graph linking to blog post

CPRN’s progress as a Learning Health Network is published!

The Cerebral Palsy Research Network’s progress as a Learning Health Network (LHN) has been published in the Journal for Pediatric Rehabilitation Medicine this past week.

Primary author Amy Bailes, PT, PhD, published a self-assessment from leaders in the Cerebral Palsy Research Network using a tool developed by Cincinnati Children’s Hospital called the Network Maturity Grid (NMG).[1] The NMG is used to detail the maturation of necessary infrastructure and processes to create learning networks (LNs).

Bailes’ publication, the fourth since the CP Research Network’s inception six years ago, provides a glimpse into future directions for the network’s development. It details a standardizing scoring rubric used to assess progress across six domains including:

  • Systems of Leadership
  • Governance and Management
  • Quality Improvement
  • Engagement of Stakeholders
  • Data and Analytics
  • Research

The results were tabulated and graphed to provide insights into progress in each domain and areas for improvement.

The CP Research Network’s leadership team amalgamated this analysis to identify key investments that will improve our network maturity over the next five years. Moving forward, these investments will be centered on leadership development, financial sustainability, quality improvement training, the capture of patient-reported outcomes, and enhancing the quality of data collection.

The purple cover of the Journal of Pediatric Rehabilitation Medicine has its title and graphics of children playing, a person in a wheelchair, walkers and helping hands inside of green, pink and orange circles.

The cover of the Pediatric Rehabilitation Medicine.

The Network will incorporate the NMG tool into annual planning. Investments will be measured over the course of a five-year strategic plan for 2021-2025.

Members of the professional and academic community can access the article online with a Journal subscription. Community members may download the original article (prior to revisions required by the editors) from our website.

A banner with MyCP Webinar Series, ‘What is a learning Health Network and why should you care?’ and a photo of Dr. Amy Bailes.

What is a Learning Health Network – and why should you care?

Amy Bailes, PT, PhD

Amy Bailes, PT, PhD

On Monday, June 21, at 8 pm ET, we invite you to tune in for our next MyCP Webinar, to discover why the Cerebral Palsy Research Network is working to become a learning health network and how doing so will enhance our efforts to improve health outcomes.

The webinar will be presented by Amy Bailes PT PhD, leader of the CP Research Network’s quality improvement initiatives. She will outline how learning networks – that often form a registry at their core – can quickly gather and share data that rapidly improve treatment experiences for patients.

During the 40 minute webinar, Dr. Bailes, a physical therapist and researcher at Cincinnati Children’s Hospital, will also outline the CP Research Network’s efforts to become a learning health network and how that ties in to clinical initiatives we already have underway.

“Taking the most effective practices from the best CP centers across the nation and spreading those practices in a systematic fashion, will have profound impact on the health of people with CP,” says Dr. Bailes. “This is how we should be caring for all people with CP.”

Learning health networks seek to improve outcomes through a combination of research and quality improvement (QI) initiatives. While some research studies can take years to complete and can require more time to affect a change in practice, QI initiatives can drive systemic change and bring results as early as six months.

“While QI cannot answer fundamental questions about treatment effectiveness or discover new therapeutic interventions, it can be used to dramatically improve health outcomes very rapidly,” says Paul Gross, President and Chief Executive Officer of CP Research Network.

Members of the community, clinicians and researchers interested in learning more about the CP Research Network’s drive to become a learning health network can tune in to the June 21 webinar by registering on the sidebar at the top (or on the MyCP Webinar Registration page).