“For Our Voices to Count”

More than 45 people gathered in Chicago on June 16-17, 2017 as part of the Research CP Workshop to form a unique partnership that inspired optimism, hope and a vision of change for treatment and outcomes for people with cerebral palsy (CP). Twenty-four parents, caregivers and adults with CP joined with 23 doctors, therapists and researchers to discuss a prioritized research agenda for cerebral palsy.

A differentiator of the workshop is that it was inclusive of a broad range of people who have CP including those who use wheelchairs and are nonverbal plus parents and caretakers. Many traveled with assistance from all over the country to be there and it was the first time that they had had a chance to sit at the table with clinical researchers and be heard about what matters most to them about research.

“It was a great experience,” spelled Kathy Jo Pink on her Augmentative and Alternative Communication (AAC) Device, and she said what she learned she can take back to her housemates (who also have CP) about how the research will move forward.

Mother and personal attendant Diantha Swift added, “I came as a personal attendant for my 40-year-old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adult and children who have lived the life of cerebral palsy — for our voices to count is overwhelming.” Swift is an elementary school principal and mother of Amanda who has CP.

For community members, the opportunity to communicate their desires and difficulties with some of the most respected clinical researchers in the field created a tremendous sense of empowerment and hope for the future. And for the passionate clinicians and researchers, the interaction with such a diverse set of community members living with CP enabled new insights and optimism for their work and research.

Unni Narayanan, M.D., an orthopedic surgeon at SickKids and the president of American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) remarked, “I came here to better understand the perspective of the people that we are ultimately trying to help. I have learned a lot. I’m very optimistic that we can use this process and this partnership to answer many of the questions we have considered here.”

Research CP, an initiative to set a patient-centered research agenda for CP, was created as a collaboration of CPRN and CP NOW, and partially funded through a Eugene Washington PCORI award. After running a series of webinars to establish a common language for members of the CP community and providers to discuss research ideas, a group of more than 180 members of this extended community participated in a research priority setting process through a collaborative survey platform. A subset of that community was invited to the Research CP workshop in Chicago to further hone the research ideas into an agenda. The preliminary findings from the Research CP process are posted on CPRN and the Research CP team has begun the process of writing a manuscript to document the outcomes from the initiative.

Paul Gross, the founder of CPRN, summarized the importance of the Research CP Workshop, “Research CP has altered the perspective of some of the top CP researchers about what matters most to the CP community – and will fundamentally change the course of CP research. For those who care for people with CP or live with CP, their ‘voices’ really do count.”

Chicago Bound: Tune in to the Research CP Workshop this Friday!

In just a two days, more than 45 people from the cerebral palsy community including adults with CP, parents of children with CP, researchers and clinicians and CP community advocates, will convene on Friday, June 16, 2017 in Chicago, after months of engagement organized by CPRN and CP NOW and the Research CP planning team. This workshop is the first time that doctors and members of the CP community will be working together to set a comprehensive clinical research agenda for CP. And you can be a part of it by tuning in.

Audio: (641) 552-9473 Access Code: 430970#
Screen share: join.freeconferencecall.com/researchcp

We are excited to announce that you can tune in to the workshop broadcast via webinar with audio and slideshow. The broad goal of the workshop is to prioritize CP research from varied perspectives in the community.

The goals of the workshop will be:

  • Synthesizing the top research ideas from Codigital to be “research concepts”, i.e., with enough clarity that researchers will be able generate meaningful questions and create hypotheses that can be used for studies and grant applications.
  • Using “multi-voting” we will prioritize the resulting research concepts.
  • Conveying how the research and clinical community will leverage this work.

The agenda is:

Friday 8:30 am – 12:30 pm CT, 4:00 pm – 5:00 pm CT and Saturday, 8:30 am – 2 pm CT

These are the top three research ideas that were generated by the survey process. The top 20 will be points of discussion:

  1. What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan?
  2. Research the issues around aging with CP, to understand not only how to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments such as pain, fatigue, and functional loss.
  3. Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities?

We are excited to meet and greet everyone in Chicago and to prioritize a CP clinical research agenda with the input from the full community. Our hope is that the prioritized research agenda will improve outcomes for those with CP in the future.

CP Alliance Partners to Support Research CP

CP Alliance Research Foundation

CP Alliance Research Foundation

The Cerebral Palsy Research Network (CPRN) and CP NOW are pleased to the announce their partnership with Cerebral Palsy Alliance Research Foundation (CPARF) for the Research CP workshop in Chicago. CPARF is the largest private research foundation for cerebral palsy and in 2015 launched a US-based presence to fund the high quality and high impact cerebral palsy research in the U.S.

“We are excited to participate in the formation of a patient-centered research agenda for CP,” said Dr. James Blackman, Medical Director for CPARF. “We expect to focus a future research effort on one of the key priorities that comes from the Research CP initiative.”

CPARF will be sponsoring a dinner for the the attendees at the workshop to provide greater opportunities for members of the community and clinician researchers in attendance at the workshop to interact with one another. Dr. Blackman and CPARF Council of Governors member Lizette Dunay will give a brief presentation of the CPARF research funding portfolio and direction during the workshop. CPRN and CP NOW are pleased to have CPARF’s commitment to leveraging the information and results from Research CP. Their support will help us move more quickly toward addressing the concerns of people with CP and their families.