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

CPRN Picks: Watch the NIH Presentation of its Strategic Plan for CP

National Institute of Neurological Disorders and Stroke

National Institute of Neurological Disorders and Stroke

The National Institutes of Health (NIH) strategy for cerebral palsy (CP) will be live streamed on Thursday, February 9, 2017. You can tune in to see the presentation videocast live. The CP strategy presentation is scheduled for 9:15 am ET during the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council meeting. The Cerebral Palsy Research Network (CPRN) founder and chairman, Paul Gross, is headed to D.C. to attend the NINDS presentation.

Gross, a former advisor to NINDS, played a significant role in the initial workshop that forms the clinical basis for the NIH strategy for CP. That workshop, held in November 2014, brought together many of the people that would form the founding leadership team for CPRN. Amy Bailes, PhD, Mary Gannotti, PhD, and Garey Noritz, MD were all in attendance and formed the initial relationships that kicked off CPRN. This group participated in a post-meeting task force to set a strategy for a national CP registry. The CPRN Registry was borne out of the discussions of this group and fills a critical gap in the NIH strategy for CP.

The NIH strategy will detail the conclusions from that initial workshop and a basic and translational workshop that was held in March 2016. NINDS program directors Jim Koenig, PhD and Codrin Lungu, MD, will present the strategic plan for CP. Directors from Reaching for the Stars, A Foundation for Hope for Children with Cerebral Palsy will also be in attendance at the presentation. Reaching for the Stars has been instrumental in influencing the Senate Appropriations Report Language that asked NIH to develop a strategic plan for CP.

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Be the change in Cerebral Palsy Research! Get involved!

CPRN and CP NOW Foundation

CPRN and CP NOW

Join us! CP NOW and the Cerebral Palsy Research Network (CPRN) need you in an important effort to engage people in the cerebral palsy (CP) community including people who have CP, caregivers and CP medical practitioners and therapists.

Learn more about the research process and help us brainstorm ideas about CP research to create a patient-centered research agenda for improving outcomes.

Together, we will be starting a new paradigm that involves you in the future direction of CP research! We hope you will share your knowledge. Sign up for the first overview webinar today!

CPRN Submits Multiple Abstracts for AACPDM Conference

Investigators from the Cerebral Palsy Research Network (CPRN) submitted four abstracts this week for the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). We will learn which abstracts are accepted in March. These submissions are reflective of the amount of activity within the network in its first two years. The abstracts include a scientific paper presentation, two breakfast seminars and one instructional course. The topics include:

  • a preliminary report from the CPRN Registry,
  • an overview of the CPRN capabilities and its Common Data Model that underlies the CPRN Registry,
  • CPRN’s quality improvement (QI) infrastructure and first QI initiative,
  • and a report from its summer 2017 workshop on setting a patient-centered research agenda for CP.

We are excited to gather in Montreal this fall and share the progress and future potential for CPRN.

CPRN and CP NOW Foundation Receive PCORI Conference Award

Conference will establish patient-centered research agenda for cerebral palsy

The Cerebral Palsy Research Network (CPRN) and its partner, CP NOW Foundation, received exciting news that their joint grant application to Patient-Centered Outcomes Research Institute (PCORI), requesting $50,000 to host a workshop to bring together people with CP, parents/caregivers, and researchers from all over the country, was approved for funding!

CPRN and CP NOW Foundation

Partners in research for cerebral palsy

The planned meeting is an important step to allow the organizations to discuss research priorities in depth and set the goal for the future direction for CP research that will best benefit the CP community from multiple perspectives.

The conference grant supports four activities to accomplish this goal:

  1. Conduct a series of online webinars to educate patients, caregivers and clinicians about patient registries, clinical trial design and comparative effectiveness research, and quality networks;
  2. Collectively build and distribute a survey for the broader patient and provider community to provide input into the research priorities for CP;
  3. Convene a meeting to synthesize the survey data, set a comparative effectiveness research (CER) and quality agenda and establish an engaged team of patients, clinicians and stakeholders;
  4. Publish a whitepaper outlining the broader community’s shared clinical comparative research and quality agenda for cerebral palsy.

The differentiator that will hopefully set this apart from other CP research efforts is that it will include the voices and perspectives of ALL members of the CP community: people with cerebral palsy, parents, caregivers, clinicians and researchers. This collaborative approach will allow for a meaningful and targeted research agenda to improve outcomes for people with CP.

Want to participate? Sign up for CPRN alerts to get the details!

CPRN Adult Registry Leaders Receive Grant to Study Medicare Data

Debbie Thorpe, PT, PhD and Mary Gannotti, PT, PhD, co-leaders of the CPRN Adult Registry group, received a grant from the Center on Health Services Training and Research entitled “Health Care Utilization for Musculoskeletal Disorders in Adults with Cerebral Palsy: An Analysis of Medicare Data.” This work will increase our understanding of healthcare utilization (real world care) for adults with cerebral palsy. The results of this study will lay the foundation for a program of research that will assess the quality and value of rehabilitation care for this population, with the ultimate objective of improving the health and quality of life of adults with cerebral palsy.

While this grant is not for a CPRN study, the learning from this study will help shape our patient reported outcomes registry work to seek the most important longitudinal outcomes.

CPRN Leadership Team Member Receives Grant

Amy Bailes PT PhD, PCS receives funding from the American Physical Therapy Association (APTA) Academy of Pediatric Physical Therapy.

A Cerebral Palsy Research Network leader, Dr. Amy Bailes, received notification of an award for her application entitled “Toward a practice based evidence model for studying physic

Amy Bailes, PT Ph.D.

Amy Bailes, PT Ph.D.

al therapy dose in cerebral palsy” from the Academy of Pediatric Physical Therapy on November 4, 2016. The study aims to establish the reliability of capturing specific dosing information about the physical therapy (PT) session from the Electronic Medical Record (EMR). EMR based data capture by clinicians treating people with cerebral palsy is critical to the vision and success of CPRN. This study will validate whether details of the individual PT session can be quickly and accurately captured from the EMR.

The grant will fund a pilot study at Cincinnati Children’s Hospital to test the process for capturing information about the PT session from the EMR. If the study yields positive results, the PT session form will be integrated into the CPRN Registry to more completely understand the impact of PT dosing and outcomes.

Adult Patient Reported Registry Nears Completion

Clinicians and researchers of the Adult Study Group have been meeting regularly to refine questions for the CPRN Patient Reported Outcomes registry. Input from the adults with cerebral palsy on the CPRN Community Advisory Committee this summer indicated that consumers wanted more information about pain management, pain prevention, optimizing function with aging, and issues with social and emotional function.

The study group adapted a survey widely used to study pain and pain management. It is developing a survey to ask individuals about perceived changes in function with aging, how they are managing these changes, social and physical supports, community and employment activities, satisfaction with life, anxiety, and depression.

Two initial surveys are being created. The first survey will focus on pain, and will allow answers to questions about pain location, interference, and management.  It will provide useful information for clinicians and consumers.

The second survey will focus on physical, social, and emotional function. It will allow the adult study group to describe self-reported functional changes, social challenges and successes, and emotional struggles and victories.  It will provide useful information for clinicians and consumers.

The study group is planning to have the surveys piloted tested in December by the community advisors for release to the broader CP community in Q1 2017. People interested in CPRN surveys should sign up for CPRN alerts.

This is an important step to begin to address the needs of adults with cerebral palsy. Studying the adult population with CP was determined to be a critical need at the 2014 Workshop on the State of the science and treatments in CP that was held by the National Institutes of Health.

CPRN’s Path to a Learning Health System

Dr. Garey Noritz, one of the Cerebral Palsy Research Network’s (CPRN) Co-founder’s, co-authored an article published in Developmental Medicine and Children Neurology about his participation in a “Learning Health System” for cerebral palsy. Entitled “’Learn From Every Patient’: implementation and early results of a Learning Health System1,” describes the convergence of three major trends in medicine: electronic health/medical records (EHR/EMR), the prioritization of translational research and the need to better control health care costs.

These trends came together in a project pioneered at Nationwide Children’s Hospital (NCH) for its population with cerebral palsy. “Learn from Every Patient” (LFEP) is a single-center registry effort that sought to capture the patient information from CP clinic visits to conduct research while improving the quality of care. The CP provider team at NCH defined a set of data points that were common in each visit from a CP patient, e.g., diagnosis, type of CP, treatments, etc. These data points, historically included in the text of the doctor’s note, were represented on screens in the hospital EMR and were used during patient clinic visits.

By collecting the patient information in a structured format in the EMR rather than text in the doctor’s note, the authors were able to analyze trends in the data over a 12-month period and compare patient health outcomes among various groups that either participated in the project or were seen in another clinic.

Clinicians using the system found they were equally or more efficient than their prior method for patient care. NCH was able to increase its CP clinic volume by 20% with the same number of providers over the 12-month period studied. The study included a group of 131 patients with cerebral palsy. The impact on the health of these children was significant:

“Children treated in the LFEP Program for a 12-month period experienced a 43% reduction in total inpatient days (p=0.030 vs prior 12mo period), a 27% reduction in inpatient admissions, a 30% reduction in emergency department visits (p=0.001), and a 29% reduction in urgent care visits (p=0.046). “

In the month following the publication of this article, Dr. Rich Stevenson, a CPRN member, wrote a commentary that was published in the journal entitled “Integration of research and clinical practice: the future is now2” where he not only extolled the virtues of LFEP but also its extension in implementation in CPRN. He concluded his commentary by saying:

“Through their foundational work, the ‘Learn from Every Patient’ Study Group has in fact built a template for the data collection in both efforts. They have successfully created what others throughout the field of medicine have been calling for, and in so doing have fast-forwarded the integration of research and clinical practice for children with CP and other childhood disabilities. The future is now.”

CPRN is helping NCH to facilitate innovation in patient care. This study highlights that research can help children with CP through innovation in care.

1Lowes, L. P., Noritz, G. H., Newmeyer, A., Embi, P. J., Yin, H., Smoyer, W. E., ‘Learn from Every Patient’ Study Group (2016), ‘Learn From Every Patient’: implementation and early results of a learning health system. Developmental Medicine & Child Neurology. doi: 10.1111/dmcn.13227
2Stevenson, R. D. (2016), Integration of research and clinical practice: the future is now. Dev Med Child Neurol. doi:10.1111/dmcn.13281

CPRN Investigator Receives NIH Funding for CP Prevention Trial

Dr. Yvonne Wu, a pediatric neurologist from the University of California San Francisco, received significant funding ($2.3M over the next 12 months) from the National Institute of Neurological Disorders and Stroke (NINDS) to conduct a multi-center clinical trial to prevent cerebral palsy from a specific type of brain injury — hypoxic ischemic encephalopathy — in full term babies. While this study is not a Cerebral Palsy Research Network (CPRN) study, we are excited by the potential that the study holds to reduce the incidence of CP. Dr. Wu is the site Principal Investigator (PI) for Benioff Children’s Hospital/UCSF for CPRN. Her experience in clinical epidemiology and clinical trials makes her an invaluable asset to CPRN and we look forward to the results of this study. Her Co-PI, Dr. Sandra Juul of the University of Washington, is the lead PI on a similar trial for very low birthweight premature babies (see the PENUT trial for more information on this study).

Hypoxic-ischemic encephalopathy (HIE) refers to brain injury resulting from reduced blood and oxygen flow to a baby’s brain near the time of birth. HIE affects up to 12,000 newborns each year in the U.S. Half of affected infants have a bad outcome including death, cerebral palsy and cognitive impairment despite receiving hypothermia, the only available treatment. Cerebral palsy is the most common long term neurodevelopmental impairment in survivors of HIE. Erythropoietin (Epo) is a cytokine with remarkable neuroprotective and neuroregenerative effects demonstrated in animal models of neonatal brain injury. In a phase II trial, we randomized 50 cooled infants to receive Epo or placebo. Infants treated with hypothermia + Epo had less brain injury on MRI than infants who received hypothermia alone. Epo is commercially available, relatively inexpensive, and safe in neonates. We hypothesize that Epo given to cooled infants with moderate/severe HIE will reduce the combined outcome of death or neurodevelopmental impairment from 49 to 33%. To test this hypothesis, we will perform a randomized, double-blind, placebo-controlled trial of Epo therapy in 500 infants with HIE. We anticipate that Epo will confer improved 2-year neurodevelopmental outcome, will be safe, and will decrease brain injury severity as determined by early biomarkers. If successful, we anticipate that Epo treatment has the potential to reduce the burden of CP caused by HIE from 1368 babies to 760 babies per year in the U.S.

CPRN and UVA Describe PCORI CP Study in Webinar

Learn about CP Intervention Study Application to PCORI

Richard Stevenson, M.D., University of Virginia

Richard Stevenson, M.D., University of Virginia

University of Virginia’s Dr. Richard Stevenson and CPRN Chairman Paul Gross hosted a webinar entitled “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic Cerebral Palsy using Patient Centered Outcomes” with CPRN Site Investigators and its recently reconstituted Patient Stakeholder Partners committee on Wednesday, August 10, 2016. We have posted the webinar of the call and the accompanying slides on CPRN’s Resource Page for public consumption. The mega application to the Patient-Centered Outcomes Research Institute (PCORI) totaled 770 pages including a 45-page research plan and a 379-page budget. The application garnered 142 letters of support and collaboration from CP focused investigators, societies and academies, patients and stakeholders. Set expectation of when you might find out about funding from PCORI.

Listen to the webinar to hear investigators Stevenson, Gross, Horn and Shusterman describe the planned study, the analysis, the use of the CPRN network and how patients and stakeholders will be involved. The webinar is 40 minutes long including Q&A.