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!

Patient-centered research webinar well attended!

Jacob Kean, Ph.D.

Jacob Kean, Ph.D., University of Utah

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.

The 4th Research CP Webinar: The Research Conversation is Changing!

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.

NIH Releases Draft Strategic Plan for Cerebral Palsy

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.

Research CP Quality Improvement Webinar Posted

Amy Bailes, PT Ph.D.

Amy Bailes, P.T. Ph.D.

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.

Sign up now for next week’s Research CP Webinar #4: Patient-Centered Research and Patient Reported Outcomes, March 29, 2017 at 8 pm ET!

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.

Tune in to Tonight’s Webinar on Quality Improvement

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.

More than 100 attended Webinar #2 on Clinical Research

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.

Join the CP Conversation: Don’t Miss Webinar #2 on Clinical Research!

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!

First Webinar for Research CP is a Success!

More than 200 from the CP community tuned into our first ever webinar – both live and recorded – this week to get an overview about the Research CP initiative. This response is fantastic and demonstrates the need to share ideas and be engaged. The webinar was the first in a series of five. Research CP is a a collaboration between CPRN and CP NOW to educate and engage the community to set a patient-centered CP research agenda for better treatments and improved outcomes. The audience was comprised of adults with CP, parents/caregivers of children with CP as well as medical professionals who treat those with CP.

Paul Gross and Dr. Ed Hurvitz presented the overview of the program that includes the webinar series, a collaborative survey, an application to attend a workshop in June, the Eugene Washington PCORI funded workshop on June 16-17, 2017 in Chicago, IL and a white paper that will be the culmination of all of the learning from the webinars, surveys and workshop. Please note that applications can be submitted to attend the workshop after viewing the first webinar. If you haven’t yet, there is still time to register for our webinar series!

The audience was very engaged in the Q and A session with more questions being asked and answered than time permitted. Stay tuned. If you missed the webinar, you can go here to watch the recorded version now. Everyone who is interested is invited to watch the webinar series and the workshop in June will be be available virtually through live streaming. Many thanks to all of those who helped to make the webinar worthwhile and successful. To those who attended – thank you – and a special thank you to Dr. Ed Hurvitz and Paul Gross for presenting and Michele Shusterman of CP NOW, the organization that received the award for the upcoming workshop.

Mark your calendar for our second webinar on Wednesday, March 15, 2017 at 8 pm ET. We are pleased to have Susan D. Horn, Ph.D, adjunct professor University of Utah School of Medicine, share her insights on different methodologies for clinical research and comparative effectiveness studies.

How to join the Research CP webinar

Our kickoff webinar for Research CP – setting a patient-centered research agenda for cerebral palsy – is on today, Wednesday, March 8, 2017 at 8 pm ET. The first webinar is entitled “Research CP Project Overview” and will provide attendees with:

1) A clear picture of the three main components of Research CP — what to expect from the webinars, survey and workshop;
2) who is participating and why it is important;
3) and ultimately what Research CP seeks to change for people with CP.

This webinar will be led by CPRN Chairman Paul Gross and University of Michigan’s Professor and Chair of Physical Medicine and Rehabilitation Dr. Ed Hurvitz. You can download the calendar invite here to have the instructions ready to go. Please be ready at at 8 pm ET/7 pm CT/6 pm MT/5 pm PT. Thank you for participating!

To watch and listen to the webinar on your computer, follow these instructions:

The webinar is a combination of audio (the speaker) and video (a slide presentation which is also attached) that you can view in your browser. To view the webinar, go to:

https://join.freeconferencecall.com/881-975-274

You will be asked to give your name and email address and click on the JOIN button. If you don’t have a microphone and speakers built into your computer, or would just prefer to use your phone to listen, click on the icon of the phone to get dial-in instructions.

To listen to the webinar on your phone, dial 515 739-1030 and enter access id: 881-975-274#

Occasionally, our webinar service will give you a busy signal. If that happens, dial the following to get access to the audio for the webinar:

559-546-1400 and then 515 739-1030 and then the access id: 881-975-274#

Research CP Webinar Series to Begin

The Cerebral Palsy Research Network (CPRN) and CP NOW kickoff off their Research CP webinar series next Wednesday, March 8 with CPRN Chairman Paul Gross and University of Michigan’s Chair of Physical Medicine and Rehabilitation Dr. Ed Hurvitz providing the “Overview of Research CP – setting a patient-centered research agenda for cerebral palsy.” The webinar will be live at 8 pm Eastern Time on Wednesday, March 8, 2017. Registration is required to view the webinar.

Why should you attend this webinar? It will give you a complete picture of the webinar series and workshop for you to plan your involvement in setting the direction for CP research. People who view this webinar will be invited to participate in a survey of the most important questions to be answered in the treatment of CP. In additional, participation in the webinars is required if you want to be invited to join us in a face-to-face meeting in Chicago, IL in June 2017 to set the top priorities in CP research.

Who should attend?

  • Members of the CP community –
    • people with CP,
    • parents and caregivers, and
    • patient advocates;
  • Professionals who treat people with CP;
  • Clinical researchers interested in advancing CP research.

Register now or find out more on our Research CP overview page. We hope you will tune in! Thank you!