CPRN PI to Study Genetics of Cerebral Palsy

Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), has concluded its educational webinar series of five with this week’s final webinar on patient registries. The Cerebral Palsy Research Network (CPRN) and CP NOW are grateful to pediatric neurosurgeon Jay Riva-Cambrin, M.D. and Megan O’Boyle for their informative presentations on the value of patient registries. CPRN chairman Paul Gross also described existing and planned CP registries in the United States. The webinar covered a range of types and benefits of patient registries from two other medical conditions with well established registries. The webinar recording is still available for viewing.

With the completion of the webinar series, the Research CP project now moves into its next phase of preparing for the Research CP workshop that will be held in mid June 2017 in Chicago. This phase includes not only the selection of the attendees but also further processing of the initial set of research ideas that were generated by the collaborative survey that ran in parallel with the webinar series.

Nearly 400 research ideas were generated and voted upon by 182 people from the CP community of patients, parents/caregivers and advocates and from medical professionals who treat CP including doctors and therapists. For example, one of the leading research ideas culled from the surveys is “Research the issues aging with CP, to understand not only how to treat adults now, but to also update our treatments and therapies with children who have CP to prevent some of the secondary issues of pain, fatigue and functional loss.”

The Research CP workshop, which will include a balanced mix of attendees including patients, parents/caregivers, CP advocates and medical professionals, will synthesize the research ideas into a prioritized research agenda that will be published, shared broadly with researchers and will guide CPRN in its selection of future study concepts. The input from the CP community is invaluable to setting a patient-centered agenda that will hopefully improve outcomes long term.

Last night, Research CP held its fourth webinar on the new paradigm of patient-centered research and patient reported outcomes with Jacob Kean, Ph.D. of the University of Utah. Dr. Kean is an expert in patient reported outcome measures and and also a speech language pathologist. Many thanks to Dr. Kean for his time and insight!

More than 70 people attended the live webinar and engaged in 30 minutes of Q and A. The recorded version if available now. The topic of patient centered research is at the heart of Research CP – a collaborative effort between CP NOW and CPRN – that includes the educational webinar series, collaborative surveys and culminates in a 1.5 day workshop in Chicago in June 2017.

Reminder: Only two days left to apply to attend the workshop. You need to watch webinar #1 to get the application.

Research CP has also completed phase one of the collaborative survey on Codigital. Results of this open community effort will be essential input to the workshop in June to set the patient-centered research agenda for cerebral palsy. More than 300 people were invited and hundreds of research and care ideas were shared and voted upon as part of the first phase of the collaborative survey.

Don’t forget to mark your calendar for the last webinar on patient registries featuring speakers:

• Megan O’Boyle is the Principal Investigator of Phelan McDermid Syndrome patient powered registry, and
• Jay Riva-Cambrin, M.D., is a pediatric neurosurgeon and the Principal Investigator the clinical registry in the Hydrocpehalus Clinical Research Network.

The final webinar is on Tuesday, April 4, 2017 at 8 pm ET. Thanks to Michele Shusterman of CP NOW for her support of Research CP and to all of you who are participating and adding value to the research process.

Plan Draft Auspiciously Arrives During CP Awareness Month!

The National Institutes of Health (NIH) released a draft of its strategic plan for cerebral palsy last week and invited the public to comment on it. The Cerebral Palsy Research Network (CPRN) is highlighted in the summary as an outcome of the initial work that formed the basis of the plan. Numerous CPRN leaders participated in the two meetings that formed the building block of the 5-10-year strategic plan.

While the plan accurately captures the recommendations of these two meetings, it contains a lengthy list of “priorities.” The public comment period provides an excellent mechanism for members of the CP community and researchers to comment on the plan and potentially fill in gaps or hone the priorities listed. Organizations are encouraged to consolidate their recommendations and submit them by April 7, 2017. CPRN will leverage is work on the Research CP initiative to provide a set of recommendations to NIH regarding the plan. Others not connected with the Research CP initiative, should consider adding their comments to the plan.

CPRN congratulates Reaching for the Stars, a foundation for hope for children with cerebral palsy, for its efforts to get NIH to create this strategic plan. Their adept focus on Congressional leaders has significantly influenced this initiative within NIH. CPRN also congratulates its partner CP NOW for the creation of its CP Toolkit as it fulfills one of the key recommendations from the NIH strategic plan to create a 100 day resource for families with new diagnoses of cerebral palsy.

Tonight, Wednesday, March 22, 2017 at 8 PM ET, we will conduct our third webinar in the Research CP series. Amy Bailes, P.T., Ph.D., of Cincinnati Children’s Hospital, will present on Quality Improvement methodologies. This webinar will demonstrate how treatments and outcomes can be improved more rapidly than typical clinical research methodologies through an iterative process that includes doctors, therapists, patient families and others working together. Sign up here to get access information for the webinar or the recording afterward.

Research CP is an initiative to set a patient-centered research agenda for cerebral palsy. It consists of a series of webinars in March and the first week of April, a collaborative community survey of research priorities, a workshop in Chicago in June 2017 and a white paper describing the resulting agenda. Research CP is a collaboration of the Cerebral Palsy Research Network (CPRN) and CP NOW and partially funded through a Eugene Washington PCORI award. The initiative started with our first webinar on March 8, 2017 and you can still register to participate in Research CP. The in-person workshop attendance will be by invitation only after a brief application. Applications are due March 31, 2017. Applications are made available upon watching the first webinar. For more information about the Research CP initiative, see our Research CP page on CPRN.