O-R-E-O cookie milestone!


This afternoon Maya called me from the other room and asked me to come watch her do something. She was all smiles and she showed me that she is finally able to twist Oreo cookies apart. I would say that is definitely a cool childhood milestone but perhaps one I wasn’t expecting and one I didn’t know she was working on. She said this was actually the second time she had done it and that the first was to offer her friend half when she was over our house the other day. How sweet is that?!! It also points to how motivating peers can be. 

As Maya grows I am beginning to see what opens windows for her to make meaningful progress. Her fine motor skills have always been quite basic until this past year and a half. So what’s the change? From what I can tell it’s the combination of her motivation combined with activities/practice she enjoys:

1. Beginning piano (I never thought that one was going to be possible).

2. Having lots of small beads to work with in her Montessori school. Even these made me frustrated but they were combined with math learning which she is so passionate about.

3. Her love of card playing.

These fine motor changes make a lot of sense and align with what researchers are discovering about CP and how to create new motor pathways. They are finding that our kids and adults are having the greatest success in learning new skills when there are purposeful goals attached to the movements the therapists are working on. The motivation piece is something known to be important for all learning and is often mentioned as a key component for neuroplastic changes.

Here’s to our Oreo cookie milestone and the milestones you and your family members are reaching! Don’t be afraid to try something new and remember (this took me a while) that you can break everything down into VERY small components for your child to begin to piece together new skills.



CPRN Finalizes Application for Largest Cerebral Palsy Study

Principal Investigators Rich Stevenson, M.D., of the University of Virginia (UVA) and Paul Gross of the Cerebral Palsy Research Network (CPRN) and their study team finalized the details for what will be the largest cerebral palsy study ever conducted in the U.S. The study team and site investigators have been hard at work to complete this Herculean effort to apply to the Patient-Centered Outcomes Research Institute (PCORI) for a 23 center study. The Study Executive Team includes:

Name Institution Role
Diane Damiano, Ph.D. National Institute of Health Clinical Center Co-Investigator
Paul Gross Cerebral Palsy Research Network Dual Principal Investigator
Susan Horn, Ph.D. University of Utah Co-Investigator
Jacob Kean, Ph.D. University of Utah Co-Investigator
Unni Narayanan, M.D., M.P.H. SickKids/Holland Bloorview Co-Investigator
Garey Noritz, M.D. Nationwide Children’s Hospital Co-Investigator
Jerry Oakes, M.D. Children’s of Alabama Co-Investigator
Michele Shusterman CP Daily Living/CP NOW Foundation Co-Investigator
Richard Stevenson, M.D. University of Virginia Dual Principal Investigator

The primary goal is to determine the effectiveness of surgical interventions for ambulatory children with CP to improve gait function as measured by child and parent reported outcomes that align with family goals when compared to standard non-surgical interventions. Our secondary goal is to change practice by identifying patient and surgical details that will help clinicians and parents choose the right treatment for the right child at the right time.
The Specific Aims are to:

  1. Compare effectiveness of orthopedic surgery, selective dorsal rhizotomy (SDR), neurotoxin injection, and physical therapy (PT) alone in improving outcomes in patients ages 3-12 with bilateral spastic cerebral palsy;
  2. Describe and compare adverse events associated with each treatment option;
  3. Explore intervention characteristics associated with positive or negative outcomes controlling for patient factors.

The study executive team appreciates the efforts of the site investigators and their grants administration teams and the patient and stakeholder partners. In addition, special recognition goes to the UVA grants administration team of Kerry Day, Michelle Haynes and Angela Rogers and University of Utah biostatistician Tom Greene for making this application possible. We look forward to a positive affirmation of our work from PCORI in early 2017!

Cerebral Palsy Nonprofits and Academies Support CPRN PCORI Application

As the Cerebral Palsy Research Network (CPRN) and Richard Stevenson, MD, of the University of Virginia finalize their application to the Patient-Centered Outcomes Research Institute for a large scale cerebral palsy trial, we have received tremendous support for the study from both the cerebral palsy nonprofit organizations and the provider membership organizations. The membership organizations represent a significant part of the “delivery system” for care and have agreed to help disseminate the findings from the proposed study with their membership.

Similarly, the nonprofit organizations provide access to a very broad array of patients, parents and caregivers for children with cerebral palsy that might benefit from the study findings. The study is directly aimed at providing more definitive answers to patients, parents and providers as to what treatments work best for which patients.

Many of the societies and academies whose members treat children with CP have agreed to disseminate our results including:

The nonprofit organizations that have agreed to help disseminate our results include:

These stakeholders are joined by a number of provider and payer stakeholders that are part of the “delivery system, ” including perspectives from members of the delivery system and administration help assure that the study and its results are adopted. The delivery system stakeholders include:

  • Jon Davids, M.D., Orthopedic
  • Surgeon, Shriners Hospital of Sacramento
  • Vedant Kulkarni, M.D., Orthopedic Surgeon, Shriners Hospital of Sacramento
  • Nancy Murphy, M.D., Medical Director, Comprehensive Care, Primary Children’s Hospital
  • Robert Sawin, M.D., Chief of Surgery, Seattle Children’s Hospital
  • Lisa Thorton, M.D., Physical Medicine and Rehabilitation, University of Chicago
  • Ann Tilton, M.D., Pediatric Neurologist, Children’s Hospital, New Orleans
  • Marion “Jack” Walker, M.D., Neurosurgeon, Primary Children’s Hospital
  • Brad Wilson, C.E.O., Blue Cross Blue Shield of North Carolina

We greatly appreciate the level of support we have received from the leadership of the various provider societies, the nonprofit organizations and the stakeholders in supporting this study endeavor.

Site Survey Speaks Volumes About CPRN Study Capacity

As the Cerebral Palsy Research Network (CPRN) prepares its application for the Patient-Centered Outcomes Research Institute (PCORI), we sought very detailed information from our partner Site Principal Investigators (Site PIs) about the children they see and treat in their hospitals. The proposed PCORI application is a study of lower extremity interventions for children with bilateral spasticity (spastic diplegia). We asked each site to review their volume of patients that fit our core “eligibility” criteria for the study — ages two to 12 years and Gross Motor Functional Classification Scale I-III. We asked how many children did they see last year with ambulatory CP that met those criteria. Subsequently, we asked how many of those children received:

  1. gait related neurosurgery surgery specifically selective dorsal rhizotomy (SDR);
  2. gait related orthopedic surgery;
  3. how many had medical treatments such as botulinum toxin (botox) or phenol injections;
  4. and how many only had physical therapy over that 12-month period.

We were gathering these data for planning the study but the results are fascinating unto themselves. Below are a few highlights from the 23 centers participating in this study application. Each of these data points are only for the cohort of patients that are between the ages of two and 12 years and have bilateral spasticity seen in the last year:

  • more than 4,200 of these children were seen in clinic;
  • there were 714 (16.7%) orthopedic surgeries performed to treat them;
  • another 157 (3.7%) had an SDR;
  • approximately 1,500 (35%) were treated with botox or phenol injections;
  • the largest treatment group was physical therapy only with more than 1,800 (43%).

While these numbers are interesting in the aggregate, the practice variation underlying them is quite significant and will be a key part of this study along with the associated patient outcomes. We appreciate the significant work that our study partners have done to contribute to this survey. At the outset of this process, the survey was quite daunting to the Site PIs. CPRN leadership team member, Dr. Ed Hurvitz quipped “I am pleased to tell you that I am currently involved in a major registry project called CPRN.  Once that is moving along and rolling, I will be able to pull out all of the data on the sheet without much effort!  Currently, it is hard to imagine where I get all of those numbers.” This statement speaks to the power of the cerebral palsy registry that CPRN is developing.

CPRN Invites Eight New Sites to Partner in PCORI Application

Twenty Three Sites Invited To Participate in Groundbreaking Study

The Cerebral Palsy Research Network (CPRN) has invited eight new study sites to partner with 15 of the existing CPRN network sites for the “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic (Diplegic) Cerebral Palsy using Patient Centered Outcomes” study application. The partner sites bring additional patient volume and diversity of region, practice and population to the research. CPRN welcomes the participation of the following hospitals and investigators for the Patient-Centered Outcomes Research Institute (PCORI) application:

Texas Children’s HospitalAloysia Schwabe, MDHouston, TX

Site Principal Investigator Location
Columbia/Weinberg Cerebral Palsy Center David Roye, MD New York, NY
Johns Hopkins Medical Institutes Ranjit Varghese, MD Baltimore, MD
Phoenix Children’s Hospital Taryn Bragg, MD
Michael Kruer, MD
Phoenix, AZ
Rehabilitation Institute of Chicago Gadi Revivo, DO Chicago, IL
St. Louis Children’s Hospital Toni Pearson, MD St. Louis, MO
University of Texas Health Center-Houston Manish Shah, MD Houston, TX
University of Texas Medical Branch-Galveston David Yngve, MD Galveston, TX

CPRN plans to enroll 1,500 patients in the study over a two-year enrollment period across the sites. If funded, it will be the first ever of this scale that will analyze the the most common surgical interventions for children with ambulatory CP. Using patient-centered outcomes, the study aims to yield new data to help guide both practitioners and parents when they must make critical surgical and medical decisions for children with bilateral CP. Below are all of the existing CPRN sites and principal investigators that are participating in this study application:

Site Principal Investigator Location
A.I. du Pont Children’s Hospital Freeman Miller, MD Newark, DE
Boston Children’s Hospital Benjamin Shore, MD, MPH Boston, MA
Children’s Hospital of Colorado Dennis Matthews, MD Denver, CO
Children’s Hospital of Alabama Brandon Roque, MD Birmingham, AL
Cincinnati Children’s Hospital Amy Bailes, PhD
Jilda Vargus-Adams, MD, MPH
Cincinnati, OH
Gillette Children’s Specialty Healthcare Michael Partington, MD Minneapolis , MN
Nationwide Children’s Hospital Jeffrey Leonard, MD
Garey Noritz, MD
Columbus, OH
Primary Children’s Hospital/University of Utah1 Robert Bollo, MD
Jacob Kean, PhD
Susan Horn, PhD
Salt Lake City, UT
Rady Children’s Hospital Pritha Dalal, MD San Diego, CA
Seattle Children’s Hospital Kristie Bjornson, PhD Seattle, WA
SickKids/Holland Bloorview Unni Narayanan, MD, MPH Toronto, ON Canada
Texas Scottish Rite Hospital Mauricio Delgado, MD Dallas, TX
University of Florida, Jacksonville Aga Lewelt, MD Jacksonville, FL
University of Michigan Ed Hurvitz, MD Ann Arbor, MI
University of Virginia2 Rich Stevenson, MD Charlottesville, VA

1Data Coordinating Center
2Clinical Coordinating Center

The application is due to PCORI on August 9, 2016 and CPRN will be informed of the funding decision in early 2017. The study will hopefully begin to enroll patients in October, 2017.