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!

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!

CPRN Picks: Watch the NIH Presentation of its Strategic Plan for CP

National Institute of Neurological Disorders and Stroke

National Institute of Neurological Disorders and Stroke

The National Institutes of Health (NIH) strategy for cerebral palsy (CP) will be live streamed on Thursday, February 9, 2017. You can tune in to see the presentation videocast live. The CP strategy presentation is scheduled for 9:15 am ET during the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council meeting. The Cerebral Palsy Research Network (CPRN) founder and chairman, Paul Gross, is headed to D.C. to attend the NINDS presentation.

Gross, a former advisor to NINDS, played a significant role in the initial workshop that forms the clinical basis for the NIH strategy for CP. That workshop, held in November 2014, brought together many of the people that would form the founding leadership team for CPRN. Amy Bailes, PhD, Mary Gannotti, PhD, and Garey Noritz, MD were all in attendance and formed the initial relationships that kicked off CPRN. This group participated in a post-meeting task force to set a strategy for a national CP registry. The CPRN Registry was borne out of the discussions of this group and fills a critical gap in the NIH strategy for CP.

The NIH strategy will detail the conclusions from that initial workshop and a basic and translational workshop that was held in March 2016. NINDS program directors Jim Koenig, PhD and Codrin Lungu, MD, will present the strategic plan for CP. Directors from Reaching for the Stars, A Foundation for Hope for Children with Cerebral Palsy will also be in attendance at the presentation. Reaching for the Stars has been instrumental in influencing the Senate Appropriations Report Language that asked NIH to develop a strategic plan for CP.

We need you! Science needs you!

Be the change in Cerebral Palsy Research! Get involved!

CPRN and CP NOW Foundation

CPRN and CP NOW

Join us! CP NOW and the Cerebral Palsy Research Network (CPRN) need you in an important effort to engage people in the cerebral palsy (CP) community including people who have CP, caregivers and CP medical practitioners and therapists.

Learn more about the research process and help us brainstorm ideas about CP research to create a patient-centered research agenda for improving outcomes.

Together, we will be starting a new paradigm that involves you in the future direction of CP research! We hope you will share your knowledge. Sign up for the first overview webinar today!

CPRN Submits Multiple Abstracts for AACPDM Conference

Investigators from the Cerebral Palsy Research Network (CPRN) submitted four abstracts this week for the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). We will learn which abstracts are accepted in March. These submissions are reflective of the amount of activity within the network in its first two years. The abstracts include a scientific paper presentation, two breakfast seminars and one instructional course. The topics include:

  • a preliminary report from the CPRN Registry,
  • an overview of the CPRN capabilities and its Common Data Model that underlies the CPRN Registry,
  • CPRN’s quality improvement (QI) infrastructure and first QI initiative,
  • and a report from its summer 2017 workshop on setting a patient-centered research agenda for CP.

We are excited to gather in Montreal this fall and share the progress and future potential for CPRN.

CPRN and CP NOW Foundation Receive PCORI Conference Award

Conference will establish patient-centered research agenda for cerebral palsy

The Cerebral Palsy Research Network (CPRN) and its partner, CP NOW Foundation, received exciting news that their joint grant application to Patient-Centered Outcomes Research Institute (PCORI), requesting $50,000 to host a workshop to bring together people with CP, parents/caregivers, and researchers from all over the country, was approved for funding!

CPRN and CP NOW Foundation

Partners in research for cerebral palsy

The planned meeting is an important step to allow the organizations to discuss research priorities in depth and set the goal for the future direction for CP research that will best benefit the CP community from multiple perspectives.

The conference grant supports four activities to accomplish this goal:

  1. Conduct a series of online webinars to educate patients, caregivers and clinicians about patient registries, clinical trial design and comparative effectiveness research, and quality networks;
  2. Collectively build and distribute a survey for the broader patient and provider community to provide input into the research priorities for CP;
  3. Convene a meeting to synthesize the survey data, set a comparative effectiveness research (CER) and quality agenda and establish an engaged team of patients, clinicians and stakeholders;
  4. Publish a whitepaper outlining the broader community’s shared clinical comparative research and quality agenda for cerebral palsy.

The differentiator that will hopefully set this apart from other CP research efforts is that it will include the voices and perspectives of ALL members of the CP community: people with cerebral palsy, parents, caregivers, clinicians and researchers. This collaborative approach will allow for a meaningful and targeted research agenda to improve outcomes for people with CP.

Want to participate? Sign up for CPRN alerts to get the details!

CPRN Adult Registry Leaders Receive Grant to Study Medicare Data

Debbie Thorpe, PT, PhD and Mary Gannotti, PT, PhD, co-leaders of the CPRN Adult Registry group, received a grant from the Center on Health Services Training and Research entitled “Health Care Utilization for Musculoskeletal Disorders in Adults with Cerebral Palsy: An Analysis of Medicare Data.” This work will increase our understanding of healthcare utilization (real world care) for adults with cerebral palsy. The results of this study will lay the foundation for a program of research that will assess the quality and value of rehabilitation care for this population, with the ultimate objective of improving the health and quality of life of adults with cerebral palsy.

While this grant is not for a CPRN study, the learning from this study will help shape our patient reported outcomes registry work to seek the most important longitudinal outcomes.

CPRN Leadership Team Member Receives Grant

Amy Bailes PT PhD, PCS receives funding from the American Physical Therapy Association (APTA) Academy of Pediatric Physical Therapy.

A Cerebral Palsy Research Network leader, Dr. Amy Bailes, received notification of an award for her application entitled “Toward a practice based evidence model for studying physic

Amy Bailes, PT Ph.D.

Amy Bailes, PT Ph.D.

al therapy dose in cerebral palsy” from the Academy of Pediatric Physical Therapy on November 4, 2016. The study aims to establish the reliability of capturing specific dosing information about the physical therapy (PT) session from the Electronic Medical Record (EMR). EMR based data capture by clinicians treating people with cerebral palsy is critical to the vision and success of CPRN. This study will validate whether details of the individual PT session can be quickly and accurately captured from the EMR.

The grant will fund a pilot study at Cincinnati Children’s Hospital to test the process for capturing information about the PT session from the EMR. If the study yields positive results, the PT session form will be integrated into the CPRN Registry to more completely understand the impact of PT dosing and outcomes.