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!

NIH One-Million Person Study to Include People with Cerebral Palsy

The National Institutes of Health (NIH) has initiated a 1,000,000-person study called “All of Us” to implement its precision medicine initiative which enables researchers to develop therapies based on the unique characteristics of a patient’s genetics. This week, CPRN chairman Paul Gross, represented the needs of people with cerebral palsy at NIH’s research priority setting meeting in Bethesda, MD. “All of Us” has been designed to answer a multitude of health-related questions in the population.

In the Fall of 2016, the US Congress passed the “21st Century Cures Act.” The Energy and Commerce Committee defines this act as follows:

The 21st Century Cures Act (P.L. 114-146) accelerates the discovery, development, and delivery new cures and treatments. This game-changing law brings our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones, and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.

“All of Us” will soon launch and begin enrolling 1,000,000 people from across the United States. Participants will have an initial clinical examine and contribute bio-specimens such as blood that can be used to create a genome wide association study. The genome sequence, the participant’s electronic medical record and self-reported surveys will be combined to create a unique study database that can answer critical questions of what treatments will work for which patients. The study is designed to be longitudinal (a study over time) so that it can answer questions about outcome and quality of life that are not typically able to be studied with traditional research paradigms.

Gross and others were able to contribute “use cases” — study questions and required data elements for collection – that were targeted specifically at long term outcomes in CP. These use cases augment the CPRN registry and other studies CPRN is planning by providing the potential for genomic data for patients in the CPRN registry. We will provide information about how you can enroll when the “All of Us” study is launched later this spring.

CPRN Accelerates Research Submissions

The Cerebral Palsy Research Network (CPRN) is excited to announce that six abstracts for breakfast seminars, scientific papers and an instructional course were submitted this week to the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) for its annual meeting. These research submissions are evidence of the growing body of work from the network and CPRN’s readiness to engage the cerebral palsy (CP) provider and research community in opportunities to collaborate. Here is the submissions’ docket :

Scientific papers:

  • Research CP, our initiative to set a patient-centered research agenda for CP, that was completed in June 2017;
  • An update on our clinical registry which has doubled in size (now greater than 1,500 patients) since our preliminary report last year;

Breakfast seminars:

  • The benefits of joining CPRN to educate investigators on the requirements to join and the impact on a site’s CP practice and patient population;
  • Research CP to share the results of its initiative with the CP research community;
  • How to conduct quality improvement with CPRN as demonstrated by our first protocol for reducing infections for intrathecal baclofen pumps;

Instructional course:

  • Conducting multi-center clinical research with CPRN which will lead investigators through the steps to propose new research to CPRN to strengthen applications, obtain funding and leverage the Common Data Elements that have been defined by the National Institute of Neurological Disorders and Stroke and AACPDM.

CPRN plans to showcase its research platform to other professional societies including the American Academy of Physical Medicine and Rehabilitation and the American Society of Pediatric Neurosurgeons. We believe these presentation opportunities will increase interest, participation and research results for the extended CP community including providers and people and families with CP. Please let us know if you have any questions!

The Year in Review and Plans for the Future

The Cerebral Palsy Research Network (CPRN) made significant progress toward its vision of a multi-center collaborative effort to improve outcomes for people with cerebral palsy through high quality research and quality initiatives. It was funded for the first project at the start of the year through an award from the Patient-Centered Outcomes Research Institute (PCORI) to set a patient-centered research agenda for CP – Research CP. This project brought the extended CP community (people with CP, caregivers, clinicians, researchers and advocates) together to have a deep dialogue about what research is most important to the community. We have just submitted the manuscript about Research CP to Developmental Medicine and Child Neurology and hope it will be well received by the editors. Plus, we have invited a group of parents to join the adults on our Community Advisory Committee to make sure that our work is informed and influenced by all the needs of the CP community.

CPRN also saw significant progress in the expansion of its clinical registry from one site to six sites demonstrating our ability collect data both directly from the electronic medical record as well as using “chart abstraction”, i.e., where a clinical research assistant fills in forms by reviewing the medical record. With this expansion, the registry exceeded 1,100 patients enrolled putting it on a growth trajectory to be a significant factor in future CP research. Several other sites are making progress on the implementation of their Epic electronic medical record forms for CPRN which should greatly increase patient enrollment in 2018.

In addition to the registry, CPRN launched its first quality improvement protocol for intrathecal baclofen pumps led by Dr. Rob Bollo of Primary Children’s Hospital. Several clinical studies are in development or seeking funding including:

  • a genetics study led by Dr. Michael Kruer of Phoenix Children’s Hospital,
  • a supported mobility study led by Dr. Kristie Bjornson of Seattle Children’s Hospital,
  • a CP and epilepsy study by Dr. Adam Ostendorf of Nationwide Children’s Hospital,
  • surgical disparities in CP by Dr. Kirk Dabney of A.I. duPont and
  • spasticity management for diplegics currently led by CPRN chair Paul Gross.

In addition to this research activity, CPRN completed significant components of it infrastructure to enable it to grow, support new studies and produce quality research and manuscripts. The creation of the CPRN Standard Operating Procedures has documented how sites can join CPRN, leverage its research infrastructure to propose new multi-center studies, and develop more robust research through peer-reviewed study designs and manuscripts.

With this progress, CPRN educated critical audiences – most notably the American Academy for Cerebral Palsy and Developmental Medicine membership and numerous directors at the National Institutes of Health – about the opportunity to transform CP research. CPRN would like to thank all the dedicated clinicians, therapists and staff at all the sites for their efforts in making CPRN thrive. In addition, we thank the entire CP community who has championed CPRN and advocated for improved research, treatment and outcomes. We look forward to continued engagement of the community and study progress for 2018.

CPRN Prepares Its First Publication

The Cerebral Palsy Research Network (CPRN) delivered its first article to its newly formed Manuscript Review Subcommittee in preparation for submission to a leading neurology journal. The subcommittee, chaired by Dr. Jeffrey Leonard, chief of neurosurgery at Nationwide Children’s Hospital, is a multi-discipline group of clinicians, researchers in and advisors to CPRN who provide editorial oversight for CPRN publications. This group is intended to ensure that CPRN publications are of the highest quality and move through journal editorial processes more quickly.

CPRN’s first manuscript describes the process and results from the Research CP initiative that CPRN conducted in partnership with CP NOW. Research CP brought members of the CP community together with clinicians and researchers to set a patient-centered research agenda for CP. CPRN plans to use the results of the Research CP initiative to prioritize its future research endeavors.

In addition to Dr. Leonard’s leadership, the Manuscript Review Subcommittee includes:

  • Diane Damiano, PT, PhD from the NIH Clinical Center
  • Mary Gannotti, PT, PhD from University of Hartford
  • Susan Horn, PhD from the University of Utah
  • Ed Hurvitz, MD from University of Michigan Medical Center
  • Jacob Kean, PhD from the University of Utah
  • Michael Kruer, MD from Phoenix Children’s Hospital (Vice Chair)
  • Jason Rhodes, MD from Colorado Children’s Hospital
  • Brandon Rocque, MD from Children’s of Alabama
  • Christine Thorogood, MD from University of Florida Jacksonville
A preview image of a shiny emerald-green button stating ‘join’ linking to blog post ‘Join CPRN’

Join CPRN

The Cerebral Palsy Research Network (CPRN) posted a webinar entitled “How to Join CPRN” today. This 20-minute webinar features CPRN Chairman Paul Gross narrating a slide presentation that he delivered at a recent annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Montreal. The webinar takes prospective sites through a brief update on the founding and status of CPRN and then walks through the steps necessary to get the CPRN Clinical Registry up and running and how to formally join the network.

CPRN recently completed its Standard Operating Procedures (SOPs) that detail how investigators can apply to conduct their research with CPRN. The SOPs also describe the approval process for adding new sites to CPRN. This webinar will provide the fundamental background necessary to determine if joining CPRN is of interest to you and your institution for conducting research. The core difference between applying to conduct a study through CPRN and joining the network is the implementation of the CPRN Clinical Registry and ongoing collaboration for your institution. CPRN members are expected to implement the CPRN Registry at their institution and collaborate with other members of CPRN to plan and conduct multi-center studies and quality improvement initiatives.

CPRN Opens Network to Outside Researchers

The Cerebral Palsy Research Network (CPRN) has opened its network to researchers outside of CPRN. With the completion of its Standard Operating Procedures (SOPs), CPRN defined an open mechanism by which non-CPRN investigators could propose research concepts for the network. The CPRN SOPs, which are published on our website, detail how an investigator can approach the network for study consideration. The process involves multiple steps that begin with a discussion of the concept with the CPRN Executive Committee (EC). The CPRN EC determines if the study is a “fit” for CPRN with regards to medical disciplines participating in CPRN and is a priority on CPRN’s Research CP opportunity map. If given a green light, the investigator will develop a short concept proposal for review by the CPRN Investigator Committee for development into a full proposal. This process ensures that there is a fit and that members sites would be engaged in data collection for the proposed study.

Non-CPRN investigators that will develop studies approved by CPRN will be invited to join the network as a member. The study development process leverages the resources in the CPRN Data Coordinating Center at the University of Utah to develop the analytical plan and any additional data collection beyond those data collected as part of the CPRN Registry. Approved studies will be implemented using CPRN sites with the investigator’s site leading as the coordinating center for the study. CPRN was formed to accelerate important multi-center clinical research. We are excited to use our research infrastructure to continue to create high quality research that is important to the CP community.

CPRN Briefs NIH on CP Registry

NIH Workshop on CP in Neurology, 2016

NIH Workshop on CP in Neurology, 2016

Leaders from the Cerebral Palsy Research Network (CPRN) briefed numerous directors and program officers of the National Institutes of Health (NIH) on the progress that CPRN has made to create a United States based cerebral palsy registry and enable multi-center clinical research. The impetus to create the CPRN Registry was initiated at an NIH Workshop on CP in 2014 that was documented in Neurology in 2016 along with other priorities in cerebral palsy research. The CPRN Registry already has more than 900 patients from six centers since it began collecting data earlier this year. Twenty hospitals have committed to collect data for the registry and are in the process of readying their site to enter patients in the CPRN Registry.

CPRN was cited as an example of progress in CP research in the NIH Strategic Plan for Cerebral Palsy released earlier in 2017. The objective of the briefing was to determine ways that NIH and CPRN might collaborate to accelerate the NIH CP strategy. CPRN has invested in research network infrastructure similar to several NIH funded initiatives such as NeuroNext, StrokeNet and DS-Connect. NIH officers were interested to learn how CPRN’s burgeoning, rich data set of patient characteristics, interventions and outcomes could be mined to create new evidence based findings for CP treatment.

CPRN’s meeting with NIH officials comes just one month after the Senate Appropriations committee for Labor, Health and Human Services issued report language calling for increased collaboration between NIH and the research community and for the creating of funding opportunities for cerebral palsy. The report language was spearheaded by Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy. CPRN appreciates the advocacy efforts of Reaching for the Stars and its impact on the dialogue with officers in multiple institutes in NIH.

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

https://youtu.be/HIgDxjRwI_Y

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.

Research CP Workshop Materials Posted

Now you can attend the CP Workshop via a webinar!

The Cerebral Palsy Research Network (CPRN) and CP NOW are excited to offer you a webinar of the Research CP workshop that was held in June 2017 in Chicago! The workshop was the penultimate step in an initiative to create a patient-centered research agenda for cerebral palsy. The webinar contains a mix of audio and slides of more than seven hours from the workshop. Listeners can zero in on the final summation of the workshop or listen to all the proceedings at your own pace. CPRN and CP NOW plan to publish a paper detailing the results of the workshop in the coming months. Stay tuned!

The Research CP Workshop Day 1 audio/video:

The Research CP Workshop Day 2 audio/video:

Thanks for listening and participating in how you can be a part of the change in CP research. If you have any feedback or comments, we would love to hear what you have to share.