October 6 is World CP Day - Millioins of Reasons to Spread the Word

CP Research Network Featured at AACPDM

The Cerebral Palsy Research Network was invited alongside of the National Institutes of Health (NIH), the Patient Centered Outcomes Research Institute (PCORI), and C-Progress to teach early-stage investigators how to establish a successful research program at their institution during the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The nine-hour pre-conference tutorial featured presentations from each of these research and funding organizations to emphasize key steps for an investigator to get funding. The CP Research Network is differentiated from its co-presenters by being an organization that facilitates and conducts research.

In addition to presenting the network’s programs, registries, and tools, CEO Paul Gross held a breakout session for Q&A with interested attendees. “It was an honor to present our mission and vision alongside the largest public funders for research – NIH and PCORI,” said Gross. “The attendees also heard from Dr. Michael Kruer about his experience working with the CP Research Network to gain $3M in funding from NIH for his genetic causes of CP study.”

This pre-conference session fell on October 6 – World CP Day – when the CP Research Network Board of Directors has offered to match donations two-fold! World CP Day creates awareness about CP and much needed research around the globe. We are excited to be part of accelerating that research by educating new investigators to the field.

Dr. Wade Shrader of Nemours/AI duPoint, smiling in a blue suit, will present on the importance of hip surveillance

Webinar on Hip Surveillance and CP

Dr. Wade Shrader of Nemours/AI duPoint, smiling in a blue suit, is an orthopedic surgeon who leads the CP program at Nemours

Dr. Shrader, an orthopedic surgeon, leads the hip surveillance initiative for the CP Research Network.

After taking a break during the last month of summer, our MyCP webinar series will resume on Wednesday, September 29 at 8 pm ET with a presentation on our hip research program. Hip pain is the most frequent cause of pain in children with cerebral palsy and can cause problems with mobility and range of motion. We have begun a hip surveillance program at our the CP Research Network centers to proactively address this issue—a very challenging task to undertake. Our upcoming webinar will feature Dr. Wade Shrader, a pediatric orthopedic surgeon and Division Chief of Cerebral Palsy at Nemours/AI duPont Hospital in Wilmington, DE who leads this effort for the network. He is also the parent of four children, two of whom are adults with CP.

In order to protect the hips of children with CP, the American Academy for Cerebral Palsy and Development Medicine (AACPDM) released an updated “care pathway” recommending the frequency and techniques for monitoring the hip health of children with CP in June 2018. Care pathways combine the latest evidence-based medicine and expert opinion to provide guidance on how to treat complex conditions. Dr. Shrader will discuss the anatomy of childrens’ hips, the impact of CP, the importance of monitoring hips, and how parents and caregivers can advocate for their child’s hip health.

“I know first-hand as a Dad how tough recovery from hip reconstruction surgery can be, “ said Dr. Shrader. “I’m looking forward to talking with the CPRN community about hip issues in Cerebral Palsy, and to give my perspective as both a pediatric orthopedic surgeon and a family member.”

Community members and clinicians interested in the webinar can sign up on cprn.org. MyCP members and series registrants will receive the Zoom link automatically prior to the webinar. Join us!

Dr. Laura Gilbert, with shoulder length brown hair and a green shirt, smiles broadly. Her dystonia abstract won her an award

Dystonia Agenda Takes Center Stage at Child Neurology Society Meeting

Laura Gilbert, DO, a pediatric neurologist, with shoulder length brown hair and a dark green shirt, smiles broadly.

Laura Gilbert, DO, has won a Junior Member Award from the Child Neurology Society, for her abstract on a patient-centered dystonia research agenda.

Dr. Laura Gilbert, a pediatric neurologist at St. Louis Children’s Hospital, has been selected to present our Dystonia in Cerebral Palsy patient-centered research agenda at the Child Neurology Society (CNS) meeting in Boston, MA in September 2021.

Her talk, entitled, “Top 10 Areas of Research Need for People with Cerebral Palsy and Dystonia: A Novel Community-driven Agenda,” is based on collaborative work she carried out with the Network to engage the community in a research priority setting process for dystonia in CP in 2020.

“Dr. Gilbert played a significant role in the organization and analysis of our dystonia agenda setting process,” said Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders specialist from Washington University in St. Louis. “She is a smart and savvy burgeoning clinician researcher. It’s been a gift to see her interest bloom in dystonia in CP.”

The Child Neurology Society gathers neurologists annually to advance research and the treatment of pediatric neurological conditions. The live platform presentation has been selected as one of the top 20 abstracts submitted to the meeting. Further congratulations are in order for Dr. Gilbert who will be recognized as one of four Outstanding Junior Members for her work.

Her talk, and talks by her mentor Dr. Aravamuthan, will increase the focus on CP at this year’s CNS meeting. This increased focus will improve child neurologist awareness of issues faced by people with CP and promote research opportunities in the field.

Dr. Mary Gannotti with shoulder length brown hair smiles broadly in red blouse and brown blazer

Join our Webinar on Adult Wellbeing and Pain in Cerebral Palsy

How does your lived experience align with the initial results from our chronic pain study?

Mary Gannotti, PT, PhD, smiles with brown shoulder length hair, a red blouse and a brown blazer.

Mary Gannotti, PT, PhD

Compiling information about the chronic pain and wellbeing challenges many adults with cerebral palsy experience, sometimes on a daily basis, is an important priority for the Cerebral Palsy Research Network as we work to improve health outcomes for our community.

On Monday, July 19, at 8 pm ET, Mary Gannotti, PT, PhD, co-principal investigator of the CP Research Network’s adult study group, will present an update on our adult study of wellbeing and chronic pain.

Dr. Gannotti’s study seeks to gather cross-sectional data from 500 adults with CP to demonstrate health differences between adults with CP and the adult population overall. This interim report includes data from approximately the first 200 participants in the study.

“Members of the community will find it valuable to see how their personal lived experience aligns with many other adults with CP,” says Paul Gross, President, CEO and Co-Founder of the CP Research Network. “Dr. Gannotti will discuss how we plan to use these findings to support additional adult research and to advocate for policy changes in healthcare to improve health outcomes for adults with CP.”

Prior to Tuesday’s virtual event, MyCP webinar series registrants and MyCP members will receive a reminder with a link to the webinar. If you are not subscribed to the series, you can sign up for this individual webinar on our MyCP Webinar Series page.

The presentation will last for approximately 30 minutes and be followed by an open Q&A with Dr. Gannotti. All of our webinars are recorded and posted on our YouTube channel subsequent to the live webinar. You can also view Dr. Gannotti’s inaugural presentation after we initially launched the study in 2019.

Adults with CP can still participate in the study which is hosted in our Community Registry on MyCP.

The patient priority framework from PSCORE shows an interrelationship between patient priorities, interventions and outcomes for living with cerebral palsy.

A step forward in Standardizing Patient Reported Outcomes

Hospitals and clinicians in the Cerebral Palsy Research Network will be able to track, learn from, and compare outcomes for their patient populations thanks to our selection of standardized patient outcome measures. The CP Research Network has collaborated with Dr. Unni Narayanan, the subject of our recent CP Stories series, at the Hospital for Sick Children in Toronto, Canada, to standardize a validated set of patient-reported outcome measures (PROMs) across the network. Working closely with Nationwide Children’s Hospital in Columbus Ohio and Dr. Narayanan’s PRIORITY-BASED SCALES FOR CHILDREN’S OUTCOMES – RESEARCH & EVALUATION (PSCORE) Program, the CP Research Network has released electronic versions of two PROMs to collate patient information across sites in our network.

The Gait Outcomes Assessment List (GOAL) and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) will ensure CP families can provide information and communicate their needs to clinicians in patient facing portals like Epic’s MyChart. On a wider scale this submitted data will also help improve treatment more widely in the CP community. Shared decision-making helps balance the input of doctors and experts with the priorities and preferences of patients and their families.

The patient priority framework from PSCORE shows an interrelationship among patient priorities, interventions and outcomes for people living with cerebral palsy.

The patient priority framework from PSCORE shows an interrelationship among patient priorities, interventions and outcomes for living with cerebral palsy.

In addition to these benchmarking capabilities, the PROMs allow patients and patient families to identify important goals, which clinicians can take into account as they make decisions about treatments. And the standardization of PROMs holds the promise to improve medical and surgical outcomes across the network.

Dr. Narayanan has been funded by the Canadian Institute for Health Research (CIHR) to study the impact of these tools in improving shared decision making.

Patient families can use these tools today in MyCP – the CP Research Network’s personalized platform for cerebral palsy resources. The CPCHILD and GOAL Questionnaires are available in the MyCP Community Registry that can be taken annually to track a child’s progress across numerous domains like activities of daily living, mobility or participation. Once a family takes the survey, they can download a PDF of their results which includes their important goals, and bring these results to an appointment with their CP focused physician or therapy team.

The CP Research Network will enhance these tools over time to provide summary reports that will include the scores and list of important goals to better support shared decision making. Parents of children under the age of 18 can sign up for MyCP and take these surveys now.