Cerebral Palsy Research Network Blog

Archive for August 2017

CPRN Neurosurgery Leadership Changes

Jerry Oakes, M.D.

CPRN is very grateful to CPRN co-founder Jerry Oakes, M.D., for his contributions to CPRN. Dr. Oakes is stepping down from his leadership role as an Executive Committee (EC) member of the network. In 2015, Dr. Oakes led a group of nine neurosurgeons in defining the data elements for the two neurosurgical procedures used in the treatment of cerebral palsy – selective dorsal rhizotomy and intrathecal baclofen pumps. He has played a key role in the planning of the network strategy and operational procedures as well as contributed to initial applications for research funding. The CPRN leadership team wishes to thank Dr. Oakes for his generous contribution of time and impact on the founding of the network.

Jeffrey Leonard, M.D.

Jeffrey Leonard, M.D.

CPRN has invited to Jeffrey Leonard, M.D., Chief of Pediatric Neurosurgery at Nationwide Children’s Hospital (NCH), to represent neurosurgery on the CPRN EC. Dr. Leonard has been very instrumental in getting surgical forms built in Epic at NCH and led the effort to define the manuscript standard operating procedure for CPRN. Dr. Leonard joins the CPRN EC with a wealth of knowledge not only in neurosurgical treatments for CP but also in the function of research networks and clinical trials from his experience in cancer research.

STEP UP, CHALLENGE YOURSELF

CPRN and CP NOW are proud to be participating in this year’s national STEPtember challenge to help raise money for ground-breaking CP research.

As Research CP participants we have our own registration code that waives the STEPtember registration fee. Our code also allows us to track the funds our group raises.

STEP UP, CHALLENGE YOURSELF, JOIN AS A FAMILY & RAISE FUNDS FOR RESEARCH

What is it? STEPtember is 28-day challenge run in 8 countries around the world, initially created in 2010 by the world-renowned organization, Cerebral Palsy Alliance in Australia and have raised $15M+ in the last 6 years. In 2017, Cerebral Palsy Alliance Research Foundation is exclusively running Steptember nationally across the US, with all funds raised going to RESEARCH for CP.

We would like to urge you, your family, friends, neighbors and colleagues to participate this year and help raise much-needed funds for CP research conducted by the best and brightest minds in the US:

  • Steptember is a global fitness initiative that challenges participants to take 10,000 steps a day for 28 days: September 4 – October 1, 2017
  • In teams of up to four (but at least three), participants track their steps daily wearing a pedometer provided by Steptember
  • Results are recorded via the interactive website (www.steptember.us) or on the new mobile app each day
  • Participants don’t just walk to improve their fitness – there are over 40 activities from which to choose
  • Teams are encouraged to make every step count by fundraising for cerebral palsy throughout the challenge
  • All money raised will exclusively support research to accelerate important breakthroughs for cerebral palsy

We hope you’ll join us and show your support! How To Register Guide – 2017.

Create your team and register for free today at steptember.us using our exclusive code! ResearchCP2017.

CPRN Tours University of Washington’s AMP Lab

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, visited the University of Washington’s new Amplify Movement and Performance (AMP) lab this past week. Gross joined in at a weekly AMP lab meeting with 15 engineering undergraduate students and post-doctoral students, two of three lab co-directors — Kat Steele, PhD. in mechanical engineering and Samuel Burden, PhD. in electrical engineering — and several clinicians from Seattle Children’s Rehabilitation Medicine and Physical Therapy.


Lab members test out new gait lab: Photo credit University of Washington

After a tour of the new research gait lab space, students and post-doctoral students did introductions and shared their research interests. Gross followed with a presentation of the founding and status of CPRN and the outcomes from its recent Research CP initiative. After, there was an engaged discussion about the opportunity in standardizing gait lab data for use with the CPRN registry, the value of the CPRN registry patient and intervention characteristics and the ability to link these with long-term patient reported outcomes. Some AMP lab members already collaborate with CPRN member site Gillette Specialty Healthcare for analyzing gait lab data. Seattle Children’s CPRN principal investigator, Kristie Bjornson, PhD. in Physical Therapy, provides a critical link between the AMP research lab and future collaboration with CPRN.