Cerebral Palsy Research Network Blog

Archive for February 2017

CPRN and CP NOW Partner with AACPDM on ‘Research CP’

AACPDMThe Cerebral Palsy Research Network (CPRN) and CP NOW have partnered with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to further ensure the success of our Research CP webinar series and workshop. Research CP – setting a patient-centered research agenda for cerebral palsy – is a Eugene Washington PCORI funded award to bring together patient stakeholders (defined as a patient or patient advocate) and medical practitioners who treat CP to establish the most important research problems to address.

AACPDM has committed to communicating about Research CP to its membership, sponsoring the travel for a number of members and disseminating the results of the workshop to its membership. The academy’s involvement ensures broad exposure of the project and involvement from the professionals committed to treating CP. All interested members will be able to take part in each of the three components of the Research CP project:

  1. Attending the webinar series of five webinars of 40-60 minutes each,
  2. Participating in the survey of research priorities
  3. Attending the 1.5 day workshop in Chicago, IL on June 16-17, 2017.

AACPDM’s support of the joint research program will increase the validity of the results through the engagement of its membership.

Interested in learning more about Research CP or registering to participate? You can read the overview of the project or proceed directly to registering for the webinar series. The first webinar is scheduled on March 8, 2017 at 8 pm ET.

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

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!