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A small preview image linking to blog post ‘Research CP Dystonia Edition Starts Tomorrow’

Research CP Dystonia Edition Starts Tomorrow

The Cerebral Palsy Research Network (CPRN) and CP NOW’s latest effort to generate a patient-centered research agenda for dystonia in cerebral palsy kicks off tomorrow, Wednesday, October 16th at 8 pm ET.  Join Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil, Community Advocate Melanie Brittingham and CPRN Chairman Paul Gross, to learn about this innovative program to help establish the most important research questions in dystonia in CP.  Register for the first webinar here.

Gross will kick-off the webinar with an overview of the Research CP process – the webinars, collaborative surveys and discussions – that will result in a list of research questions that the community finds most pressing in dystonia.  Brittingham, a board member of CP NOW and the mother of a child with dystonia in CP, will provide an overview of the community experience with dystonia.  And then Dr. Aravamuthan will lead the participants through the definition of dystonia in CP.  The webinar will be followed by a question and answer session.

Research CP Dystonia Edition is intended for people who have experienced dystonia in CP and clinician researchers who diagnose and treat the condition.  The program consists of a webinar series followed by discussions and collaboration on the most pressing research questions and a voting process involving both community members and clinicians.  The program will be conducted over several months using a series of online tools and forums to garner input and priorities from the extended community. 

CPRN and CP NOW Partner on Dystonia Research

Sign-up for Research CP Dystonia Edition

In the  fall of 2019, The Cerebral Palsy Research Network (CPRN) and CP NOW will invite the extended cerebral palsy (CP) community to share its concerns and research questions about dystonia in CP.  The Research CP—Dystonia Edition program launch will begin October 16, 2019. It builds upon the original Research CP initiative hosted by CPRN and CP NOW that led to a published patient-centered CP research agenda. This groundbreaking dystonia initiative will begin with a webinar series that provides an overview of the program and the state-of-the-science in treatment and research for dystonia in CP.

Research CP— Dystonia Edition has been organized by CPRN and CP NOW in partnership with leaders in the research and treatment of dystonia including:

  • Darcy Fehlings, MD, Developmental Pediatrician at Holland Bloorview Rehab Hospital in Toronto, ON
  • Jonathan Mink, MD, PhD, Pediatric Neurologist at the University of Rochester
  • Michael Kruer, MD, Pediatric Neurologist at Phoenix Children’s Hospital
  • Bhooma Aravamuthan, MD, Pediatric Neurologist at St. Louis Children’s Hospital

The webinar’s four-part series will establish a common base of knowledge about definitions, care, current research and knowledge gaps. Afterward, we will use an online collaborative platform to generate, shape and vote on ideas about what research is needed for dystonia in CP. Discussions will be hosted on CPRN’s MyCP forum. Participants will be recruited from the community of people experiencing dystonia in CP and clinicians interested in treatment, outcomes and research of dystonia in CP. The goal of this program is to publish a research agenda that specifically addresses the most significant concerns of the community about dystonia in CP.

“As a clinician working with children with cerebral palsy and their families, I find dystonia to be one of the hardest aspects to treat” said Darcy Fehlings, MD.  “Children often have associated pain with the dystonia and it can make being comfortable during the day and night a big challenge.  These are the children I am losing sleep over!  Having a collective plan to tackle ‘dystonia’ that incorporates a broad perspective of priorities from many stakeholders to drive a research agenda will represent a significant step forward.”

The importance of improving dystonia treatments is vital to caregivers.  “I would love to find the right thing to calm those nightly dystonic leg spasms, but something that doesn’t cause a ‘hangover’ in the morning and doesn’t decrease function” said Jennifer Lyman, mother of a 14 year-old-boy with dystonia.

Community members, clinicians and researchers that are interested in participating in Research CP— Dystonia Edition can sign up at mycp.org.  Dates and details for the webinar series can be found on CPRN.

Be Heard! Join MyCerebralPalsy.org

MyCerebralPalsy.org (MyCP)

MyCerebralPalsy.org (MyCP)

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

  1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
  2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
  3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).

The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.

CPRN To Expand Presence at Combined AACPDM and IAACD Meeting

The Cerebral Palsy Research Network (CPRN) investigators will be presenting in eight sessions this fall at the combined American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 73rd Annual and the International Alliance of Academies of Childhood Disabilities (IAACD) 2nd Triannual meeting. All of CPRN’s new abstracts have been accepted including one scientific presentation, five posters and one breakfast seminar. The eighth presentation is a focused symposium in which CPRN will contribute to a panel discussion of CP registries across the world.

Six of our presentations are built on data from our registry including:

  1. Garey Noritz, MD, “Report from the Cerebral Palsy Research Network- 2019”
  2. Adam Ostendorf, MD, “Epilepsy Prevalence, Treatment and Intractability in the Cerebral Palsy Research Network Cohort”
  3. Jeffrey Leonard, MD, “A Descriptive Study of Surgical Interventions for Cerebral Palsy Patients in the Cerebral Palsy Research Network Registry”
  4. Robert Bollo, MD, “A prospective, multi-center initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project”
  5. Mary Gannotti, PT, PhD, “Pain experiences among aging adults with cerebral palsy: leveraging the Cerebral Palsy Research Network Community Registry for Patient Reported Outcomes”
  6. Paul Gross and Mary Gannotti, “How to engage patients in research and garner patient-reported outcomes using the CPRN Community Registry.”

As mentioned in the blog post from February 6, 2019, we believe the CPRN registry is gaining traction to advance research in CP. We are honored to have the recognition of the scientific program committee of AACPDM and IAACD. CPRN congratulates all the investigators who will be presenting their scientific efforts and thanks all the network sites for the many contributions to the registry and CPRN’s scientific collaborations.

CPRN Epilepsy Study Group’s First Meeting a Success

CPRN Epilepsy group

The epilepsy study group (pictured below; left to right) includes Dr. Erin Fidak-Romanowski (University of Michigan), Ashley Falke (NCH research coordinator), Dr. Ostendorf (NCH), Dr. Howard Goodkin (University of Virginia), Dr. Erica Axeen (University of Virginia) and Dr. Krista Eschbach (Children’s Hospital Colorado)

Did you know that there are a lot of co-morbidities with cerebral palsy? One is epilepsy. The Cerebral Palsy Research Network’s (CPRN) epilepsy study group’s first meeting occurred in New Orleans during the American Epilepsy Society meeting in December 2018. Our group of seizure experts is supported by a generous grant from the Pediatric Epilepsy Research Foundation (PERF).

Seizures occur in around half of children with cerebral palsy, yet little is known regarding the best way to treat both the seizures and CP . This newly-formed study section aims to build on the foundation of the CPRN through enhancing the information collected during clinic visits. This information will be used to identify risk factors and successful treatment for seizures. The study section will use this information to develop the next generation of treatment options for children both conditions.

At this meeting, the group discussed the current information collection tools and how best to use them at each center within the CPRN. They planned next steps, including measuring the impact of seizures and CP on patient and family lives and disseminating cutting edge information rapidly throughout the network. The study group members will continue their collaboration through scheduled phone calls and meet again in person in the Spring.

Dr. Adam Ostendorf, a pediatric epileptologist at Nationwide Children’s Hospital (NCH), leads the investigator team and feels tremendous momentum moving forward. “We had a fantastic meeting this year. The discussion was energized by the clear passion of the members. Contributions were forward thinking and demonstrated the potential for the CPRN to change how we care for children with seizures and CP.”

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!