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
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.
“an individual who has demonstrated outstanding leadership for trainees and colleagues in the field of cerebral palsy and other developmental disabilities. [AACPDM] considers the breadth and depth of the nominee’s contribution and impact on improving services and care, promoting professional education and research for individuals with disabilities, and the sustainability of the nominee’s mentorship over time.
–AACPDM Meeting Program 2019
Dr. Noritz is a founding member of CPRN and with his
institution, Nationwide Children’s Hospital, is a leader in defining and
implementing the CPRN Clinical Registry.
He is the principal investigator for the CPRN Clinical Registry. CPRN is
proud to see Dr. Noritz be recognized for his contributions to the field and
appreciates his ongoing contributions to the advancement of CPRN including
being a front-line resource for clinicians implementing the CPRN Clinical
Registry. This mentorship award captures
the essence of Dr. Noritz’s meaningful impact on the field of cerebral palsy
and CPRN and its members congratulate him for the award and what it means.
The Cerebral Palsy Research Network (CPRN) received five complete applications in response to its Request for Applications that it launched in June 2019 with its partner in research, CP NOW. The study proposals (requesting up to $30,000) address concerns prioritized by the Research CP initiative which set a patient-centered research agenda for Cerebral Palsy (CP). The studies have been designed to leverage key aspects of CPRN such as its patient powered or clinical registry or its access to patients through it 25 participating centers.
The five studies address diverse areas of inquiry including:
predictors of social participation
outcomes in young adults with CP who are ambulatory
feasibility of adding body composition and strength to the CPRN registry
the influence of balance on functional outcomes
maximizing function and participation children who are non-ambulatory.
The RFA was open to non-CPRN investigators and includes two applications from external investigators. The applications will be reviewed and ranked by CPRN’s Scientific Review Subcommittee in October 2019 and the awardee(s) will be announced in November 2019.
CPRN appreciates CP NOW’s generous support for this inaugural funding opportunity for CPRN. We look forward to a continued partnership to address the Research CP agenda. CP NOW and CPRN are planning future community engagements to prioritize specific questions in CP research.