The Cerebral Palsy Research Network (CPRN) is pleased to announce that Michael Kruer, M.D., a pediatric neurologist at Phoenix Children’s Hospital, is joining the CPRN investigator team. Dr. Kruer specializes in the genetics of cerebral palsy and recently joined the International Cerebral Palsy Genomics Consortium. Pediatric neurosurgeon Taryn Bragg, M.D., has been named as the alternate principal investigator from Phoenix Children’s Hospital. Phoenix Children’s Hospital has been a “fast follower” of the CPRN registry and has demonstrated significant commitment to our research objectives. Read more
CPRN PI to Study Genetics of Cerebral Palsy
Research presents cerebral palsy research updates, funding and funding opportunities, as well as new publications and the information offered within them, to keep the cerebral palsy community informed. Learn how you can be a part of the conversations by joining MyCP, an interactive cerebral palsy community forum, today!
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.
Fifth and Final Research CP Webinar airs Tuesday, April 4, 2017 at 8 pm ET
Join Cerebral Palsy Research Network (CPRN) Chairman and Founder Paul Gross and guest speakers, pediatric neurosurgeon Jay Riva-Cambrin, M.D., and Phelan McDermid Syndrome Data Network Principal Investigator (PI) Megan O’Boyle, for an educational presentation on patient registries. Dr. Riva-Cambrin, PI for the Hydrocephalus Clinical Research Network (HCRN) Core Data Project, will share learnings from his 10 years of running a large-scale clinical registry for hydrocephalus. Ms. O’Boyle, PI for the Phelan McDermid Syndrome patient-powered registry will share her insights from her experience running a patient registry where data comes directly from patients and caregivers rather than in the clinical setting. Both speakers will demonstrate the importance and power of participating in research through different types of patient registries — for community members and researchers. It you are not available to watch the webinar live, it will be recorded so you can view it later.
Gross, who co-founded HCRN in 2006, will share the plans for two CPRN registries — both a clinical and patient-powered (or community) registry. This webinar is the fifth and last webinar in the Research CP webinar series. Research CP, a PCORI funded initiative to set a patient-centered research agenda for cerebral palsy, will culminate in a in-person workshop in Chicago in June 2017 to synthesize input from the CP community as to what is most important in research. The webinar series, which can be viewed online at the Research CP webinar series page, is a critical component in establishing a common language for clinicians who treat people with CP and the broader CP community including caregivers and people with CP.
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.
Learn about Patient-Centered Research and Outcomes on Wednesday
Don’t miss this webinar, led by Jacob Kean, Ph.D. of the University of Utah, where he will describe the paradigm shift in medical research embodied by “patient-centered research” and its benefit. Learn about the role of patients in research! Dr. Kean will also explain what patient-reported outcomes are and how they differ from other types of outcome measures.
Clinical research is changing. Patient-centered research is focused on what patients care about and what is meaningful to them. Over 300 people are participating in the Research CP webinars. Join the conversation. Tune in on Wednesday, March 29 at 8 pm ET or look for the link to watch the recorded version on March 30.
Please note that there are only five days left to apply for the Research CP Workshop in Chicago in June. Deadline is Friday, March 31, 2017. Participants receive a link to the application after watching the Research CP Overview webinar.
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.
Last night, March 22, 2017, we held our third Research CP webinar featuring Amy Bailes, P.T. Ph.D., speaking on Quality Improvement methodology. Approximately 80 people from across the cerebral palsy community – people with CP, parents, and clinicians — tuned in for an educational and thought provoking presentation and discussion on quality improvement and how it might impact care and treatment for people with CP.
If you missed the webinar, access to the recording and the slides has been posted on the Research CP webinar series page on CPRN which now includes all recordings, upcoming webinar registrations, post webinar surveys, slides and other resources.
Remember, applications to the Research CP workshop in Chicago are due on Friday, March 31, 2017. A link to the application is provided in the Research CP follow-up email delivered after viewing the first webinar in the series.
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.
On Wednesday, March 15, 2017, Research CP, a collaboration between CPRN and CP NOW with a mission to engage patients, families and practitioners to set a cerebral palsy research agenda, hosted its second educational webinar about clinical research and comparative effectiveness. The session was led by Susan Horn, Ph.D, of University of Utah. We appreciate Dr. Horn’s insight. It was recorded so if you missed it, you can tune in.
The program continues to engage the CP community as demonstrated by the fact that more than 100 joined the webinar and the Q and A session went past 9 pm ET. More than 275 people have watched the first webinar on the overview of Research CP.
Also hundreds of people have contributed CP research ideas through the Codigital collaborative survey platform that is part of Research CP! There is still time to submit your ideas. Please take the tour when you first start with Codigtial as it explains the process. (Note: You must complete the first webinar to receive an invitation to the Codigital community survey.)
We have just three webinars left in the Research CP series. Next week on Wednesday, March 22, 2017 at 8 pm ET Amy Bailes, PT Ph.D, from Cincinnati Children’s Hospital, will present on Quality Improvement.
Applications are still being accepted (up until March 31, 2017) to attend the workshop in Chicago in June. Currently we have 45 applicants. After you watch the first webinar which was recorded, there is a link to apply.
Many thanks to all who participated and to Dr. Horn for making a complex subject more relatable for all.
Help to set the future direction for cerebral palsy research by participating in the Research CP webinars! Register now! Be sure to watch our next webinar tomorrow, “Clinical Research and Comparative Effectiveness” presented by Susan Horn, Ph.D., from the University of Utah, on Wednesday, March 15, 2017 at 8 pm ET.
Research CP is engaging the medical and CP communities in a deep dialogue about a prioritized research agenda to find the best CP treatments and outcomes. More than 150 ideas have already been generated and voted upon by this extended group of interested members. Webinar #2 is the second of a five-part webinar series and they are sequenced to watch in order. You should first watch the recorded Webinar #1, which gives an overview of the Research CP initiative, but you can watch Webinar #2 this week and then go back to Webinar #1 to get the complete context. The webinars are weekly through April 4, 2017.
Also, applications are rolling in to attend the Research CP face-to-face meeting in Chicago in June, 2017 limited to only 35 attendees. It is a requirement to watch the first webinar to apply. The application period closes in just over two weeks.
We hope you join us and share your insight. Research is better when we plan together! Research CP is a collaboration led between CPRN and CP NOW!