CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!

CPRN Investigators Invited to Apply for PCORI Funding

The CPRN investigators have been invited to submit a full Patient-Centered Outcomes Research Institute (PCORI) application for the Large Pragmatic Studies to Evaluate Patient-Centered Outcomes – Spring 2016 Cycle which closes on August 9, 2016. Richard Stevenson, M.D., of the University of Virginia, is the lead Principle Investigator in the study entitled “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic (Diplegic) Cerebral Palsy using Patient-Centered Outcomes.” The study funds requested are in excess of $7 million. This five-year study, if funded, will fill critical information gaps in the treatment of children with CP for clinicians and patient families. Children between the ages of 2 and 12 with ambulatory CP that are considered candidates for surgical interventions will be enrolled at the 18 sites within the network. Site selection will be completed before the end of June 2016. The study is expected to enroll 1,500 patients in the first two years of accrual.

This study is a revision of a study that was submitted last year. The PCORI review committee encouraged the investigators to narrow the scope of the study regarding inclusion criteria to limit the heterogeneity of the population being study and increase feasibility of enrolling the target number of patients. We are pleased to have the opportunity to submit this revised study and are optimistic about it being funded.

CPRN Registry Data Collection Begins!

Major milestone marks start of a national cerebral palsy registry!

The CPRN Registry Protocol was approved by the Nationwide Children’s Hospital’s (NCH) Institutional Review Board (IRB) on Monday, June 6, 2016 with a retroactive start date of April 22, 2016. The CPRN CP registry protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CP registry research project, is a critical step in the collection of data for the CPRN Registry. This approval means that all patient data that has been collected at NCH since April 22 – 73 patients in all – will be included in the CPRN Registry.

While the NCH’s IRB approval is exciting news it will also act as a catalyst for the 17 other CPRN clinical centers for IRB submission to begin. Other CPRN sites could be ready to collect cerebral palsy registry data in just a few months.

It has taken less than one year from the time that CPRN was formed to create a national registry until the first patient data was collected! CPRN greatly appreciates the efforts of Dr. Garey Noritz, Director of the Cerebral Palsy Program at Nationwide Children’s Hospital, for his leadership in getting the CPRN Registry up and running in such an efficient manner.

CPRN Adds Adult Patient Advisory Committee

Critical Step In Creating Patient-Centered Research

The Cerebral Palsy Research Network (CPRN) invited a group of 11 adults with CP and adult caregivers to form the adult study panel of its Patient Advisory Committee (PAC). The PAC will be involved in the work of CPRN at several levels including advising on the strategic direction of CPRN, help prioritize its research and participate at every level of study development including design, recruitment, analysis, and dissemination. Patient involvement not only empowers the community, but also increases the relevance of study results.* The adult study panel will be focused on the specific areas of adult study in CPRN’s research starting with the CPRN Registry. The first effort for the adult study panel will be to review the CPRN Registry and its initial patient reported outcomes. The adult study panel members include:

  • Kate Cardoza
  • Dallila Castillo
  • Jill Chambers
  • Ted Conway
  • Karen Irick
  • June Kailes Issacson
  • Andrew McAleveay
  • Karen Pleasant
  • Carol Shrader
  • Robert Watson
  • Duncan Wyeth

CPRN’s Adult Registry team, led by Mary Gannotti, PT Ph.D. of University of Hartford, and Debbie Thorpe, PT Ph.D. of University of North Carolina Chapel Hill, will engage the members of adult study panel in the CPRN’s initial path into research of adults with CP.

Michele Shusterman, CPRN’s community liaison, will be expanding the PAC to include an additional 10-12 patients and caregivers for children in the coming weeks.

* Frank L, Basch E, Selby JV, For the Patient-Centered Outcomes Research Institute. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA.2014;312(15):1513-1514. doi:10.1001/jama.2014.11100.

CPRN Community Engagement Director is AACPDM Award Recipient

Michele Shusterman, CPRN Community Engagement Director

Michele Shusterman, CPRN Community Engagement Director

CPRN is proud to announce that Michele Shusterman, Community Engagement Director for the CPRN Leadership Team, is receiving the Making a Difference Award at the 70th Annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting this year in September, 2016. This award is periodically given to individuals identified as making a substantial impact in the community. In addition, she is presenting at the meeting and her talk is titled “From Chaos to Cohesion: Making Sense of CP for Caregivers.” Michele is also leading the Community Forum, formerly the Family Forum, at the AACPDM meeting this year and was instrumental in allowing community members who have cerebral palsy and their family members/caregivers to register for sessions at a meeting that inherently is a professional meeting for CP providers. This effort demonstrates her commitment to fostering true collaborative, family-centered care.

Michele is the founder of the nonprofit CP NOW Foundation for Advancing Neurorecovery and CP Daily Living, a website and blog for the CP community and caregivers. Both of her organizations’ missions are focused on improving the lives of people with cerebral palsy and their families through education, wellness and support.

CP Toolkit

CPNow’s CP Toolkit: A resource for Families

CP NOW launched this year and it recently released The Cerebral Palsy Tool Kit – From Diagnosis to Understanding, the unprecedented comprehensive resource that will guide you through the initial diagnosis period, direct you to other helpful resources and provide information to you about the different approaches to treating and managing CP. It is available as a free download from CP NOW and also available as a print document through Amazon for the cost of printing.

She lives in South Carolina with her husband Blake, her outspoken and spunky daughter who has CP, and their two beloved Jack Russell Terriers. Congratulations Michele for being the 2016 recipient of the AACPDM’s Making a Difference Award! CPRN appreciates all that you do for the CP Community!

Complete CPRN Registry System Demonstrated

CPRN is excited to announce that a major milestone has been reached with the help of both Texas Scottish Rite Hospital and Nationwide Children’s Hospital regarding EMR rollout.

Texas Scottish Rite Hospital for Children’s (TSRH) Chief Medical Information Officer, Lawson Copley, M.D. demonstrated a complete implementation of the CPRN Registry to the CPRN Investigator Committee on May 9, 2016. Dr. Copley built the CPRN forms for TSRH upcoming Epic electronic medical record system (EMR) rollout. Dr. Copley is an orthopedic surgeon at TSRH who has extensive experience with building EMR based forms that combine clinical visits with research goals. He is also chairs the Pediatric Orthopedic Steering Board, providing advice on structured data collection for orthopedic interventions, for Epic. The work of TSRH has formed the basis for recommendations to Epic for structured data collection for cerebral palsy.

This demonstration gave the CPRN investigators a view of how the whole CPRN Registry will work within the context of the clinical work flow. The Epic forms will ultimately be shared with all CPRN members who are Epic customers. There are seventeen forms in three different categories planned: surgical, clinical and patient reported. The plan for the CPRN Registry is to first roll out the CPRN clinical forms that have been developed by Nationwide Children’s Hospital. This roll out is tentatively scheduled for late summer and will enable multi-center data collection on cerebral palsy patients. This staged approach to the CPRN Registry pilot will accelerate the readiness of CPRN sites to rollout the complete CPRN Registry data collection suite of forms in early 2017.

Dr. Ed Hurvitz Joins CPRN Leadership Team

Ed Hurvitz, M.D.

Ed Hurvitz, M.D.

The Cerebral Palsy Research Network (CPRN) welcomes Edward Hurvitz, M.D. to the CPRN leadership team and Executive Committee. Dr. Hurvitz is Professor and Chair, and James W. Rae Collegiate Professor, Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He has been involved in the diagnosis and management of pediatric onset disabilities, especially cerebral palsy (CP) for over 25 years. His research focuses on adolescents and adults, including areas such as health and fitness, health-related outcomes, and transition to adulthood. Dr. Hurvitz has been chair of the department of Physical Medicine and Rehabilitation since 2006. His work with cerebral palsy has led to membership on the Children’s Motor Study Group, an NINDS/NIH sponsored group of experts in the field. He is also currently co-leading the International Cerebral Palsy Health Promotion Group, which is interested in research related to obesity, activity, and risk of chronic disease in adults with cerebral palsy. In 2013, the American Academy of Cerebral Palsy and Developmental Medicine recognized his work with the Chambers Lifespan award and lecture.

CPRN Registry Forms Enter Production at Nationwide Children’s Hospital

Cerebral Palsy Registry Rollout Begins

CPRN Epic EMR Form

CPRN Epic EMR Form

The Cerebral Palsy Research Network (CPRN) Registry forms went into production at the lead registry site — Nationwide Children’s Hospital (NCH) – this week. NCH’s Cerebral Palsy Program Director and CPRN executive committee member Dr. Garey Noritz used the forms when seeing patients in clinic on Monday, April 25, 2016. “I would say this went fairly smoothly,” said Dr. Noritz. “I found it straightforward to use this flowsheet as part of my regular clinical interview with patients, and it did not make my visit any longer.”

The CPRN Registry forms, which are built into the Epic electronic medical record (EMR) system, represent a breakthrough in disease registry data collection. Most clinical registries are populated by clinical research assistants that “abstract” or interpret the data from the patient’s medical record and transcribe it into another form which takes time and resources and can be error prone because of the duplicate data entry. The CPRN Registry forms are built directly into the EMR for use by the providers that treat people with cerebral palsy. These built-in forms will eliminate duplicate data entry, additional personnel expense and reduce errors by leveraging the domain knowledge of the provider. Registry data will also be more current because the information is captured at the time of treatment rather than entered into the registry after the patient visit or intervention.

The CPRN Registry forms will be used at NCH for the next few months before being rolled out at other sites but this milestone is a critical proof point for the CPRN Common Data Model which defines the data that is to be collected for the registry.

CPRN Expands Patient Engagement to Include Adults with Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) has invited adults with cerebral palsy and caregivers of adults to join an adult registry study panel. The panel will partner with clinicians and providers who have led the creation of adult registry elements for the CPRN Registry. The panel will help determine study questions that are most important to adults with CP and have an opportunity to participate in the research process. The CPRN Adult Registry group is co-led by Mary Gannotti, PT Ph.D. and Debbie Thorpe, PT Ph.D. and includes providers from a wide range of disciplines who treat adults with (or children or both) CP. The adult registry study panel will be organized by Michele Shusterman of CP Now Foundation and CP Daily Living in her role as the Patient Engagement Leader on the CPRN leadership team. The panel members will represent a group of people with CP with diversity among age, race, gross motor function, and cognitive abilities.

CPRN plans to invite a similar panel to participate in the CPRN Registry efforts for children. Both groups will be extended opportunities to influence the overall research agenda for CPRN at a future planning meeting. The engagement of patient stakeholders in research has been demonstrated to enhance the impact of clinical research and is integral to the mission of CPRN.

CPRN Registry Protocol Submitted at Nationwide Children’s Hospital

The CPRN Registry Protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CPRN Registry research project, was submitted to the Nationwide Children’s Hospital (NCH) Institutional Review Board (IRB) today. The IRB’s role is to assure the protection of human subjects in research such that it is in accordance with all federal, institutional, and ethical guidelines. The submission of this protocol is a significant milestone in the progress of CPRN to launch a national cerebral palsy registry. It is significant for numerous reasons:

The IRB protocol approval is a required step to begin the collection of patient data for research;

    • Nationwide Children’s Hospital, as part of PEDSnet, enables us to take advantage of the Master Reciprocal IRB Reliance Agreement among PEDSnet institutions of which several are also part of CPRN including AI duPont Hospital, Boston Children’s Hospital, Children’s Hospital of Colorado, Cincinnati Children’s Hospital and Seattle Children’s Hospital;
    • Sites that are not part of PEDSnet can do a project specific reliance agreement;
    • Once the IRB protocol is approved, all other CPRN sites will be able to submit the CP registry protocol to their IRBs;
    • When CPRN seeks to expand its registry, other sites will be able to quickly gain IRB approval through the reliance mechanism.

The CPRN Registry IRB Protocol was submitted at Nationwide Children’s Hospital by Dr. Garey Noritz who is the Director of the Cerebral Palsy Program at NCH and one of the leaders of CPRN. The IRB Protocol can be found on the CPRN Resources page. CPRN appreciates the efforts of Dr. Noritz and Nationwide Children’s Hospital in launching the CPRN Registry.

Two CPRN Presentations Accepted for the AACPDM Annual Meeting

The Cerebral Palsy Research Network (CPRN) received confirmation that the two abstracts that CPRN leaders submitted have been accepted to be presented at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting September 2016. Both abstracts were accepted as Breakfast Seminars and confirm the growing interest of the AACPDM in the work of CPRN.

In the first seminar, Michele Shusterman, patient advocacy leader for CPRN and founder of CP NOW Foundation along with CPRN founder Paul Gross, will present the patient/parent/caregiver survey results that informed CPRN’s recent research study about surgical decision making for children with cerebral palsy. Their talk will be the first public presentation of the survey conducted in the Spring of 2015 that had more than 1,100 respondents. The survey sought to understand the various interventions and alternatives (medical, surgical and therapeutic) that patient families were presented with during a child’s development. The survey results include parent reported outcomes for the decision making process, the challenges, and the results of those interventions.

At the second breakfast seminar, Paul Gross will be joined by CPRN leaders including Dr. Amy Bailes, Dr. Mary Gannotti and Dr. Garey Noritz, to focus on the rollout of the CPRN Registry. The group will present the details of what patient and intervention data will be collected, how it will be collected directly into the hospital’s Electronic Medical Record (EMR) system, how it will be transferred and analyzed by the University of Utah Data Coordinating Center and how Patient Reported Outcomes, for both children and adults, will be integrated into the CPRN Registry. The seminar will also cover the future direction of CPRN with regard to Quality Improvement initiatives and expansion to include other sites.