Weinberg Family CP Center and CP Research Network Partnership Grows
A look at the collaboration since the WFCPC joined the network in 2020
The Weinberg Family Cerebral Palsy Center (WFCPC) joined the Cerebral Palsy Research Network in 2020, as the network’s first member site in New York City. The WFCPC shares the CP Research Network's mission to develop research and resources that matters most for people living with CP. As a foundational member, the WFCFC supports the network’s growth through programming and leadership involvement to improve health outcomes for people with CP. Membership in the CP Research Network ensures that the WFCPC is on the cutting edge of CP care through scientific exchange and collaboration.
The WFCPC’s multi-disciplinary lifespan program provides a large and diverse patient population for the CP Research Network’s core data project, its CP registry. The CP Research Network hosts the nation's largest CP registry which comprises of a clinical and a community-powered components. WFCPC patient families can share their lived experience with CP through the CP Research Network community registry. Through care visits with WFCPC multi-disciplinary providers, patient and intervention data can be added to the CP Research Network clinical registry. Patients who enroll in the WFCPC’s genetics study will be automatically enrolled in the clinical registry.
WFCPC Clinical Research Coordinator, Emelly Carrasco works closely with the CP Research Network to implement the data collection. “The CP Research Network enables collection of research information through clinical visits,” said Emelly. “Compared with manual entry, this is so much more efficient and reliable. The large database of over 8,000 participants would take a small army of researchers to create if it were not for this largely automated system.”
The registry plays a crucial role in enhancing patient care. Data collected from the registry enables investigators to formulate quality care and research initiatives. The WFCPC’s Child Neurologist and movement disorders specialist Linn Katus, DO, MSc, is a member of the CP Research Network dystonia quality improvement initiative. The group gathers health care providers and researchers from member institutions to discuss how to improve the identification and documentation of dystonia in patients with CP. "It has been wonderful connecting and working with others who are passionate about finding ways to improve the quality of life of people with cerebral palsy," shared Dr. Katus. "I have learned a great deal about different ways to approach a patient evaluation and how we can standardize aspects of our care to lead to better outcomes for our patients."
The WFCPC's Executive Director and Research Director of the Movement Recovery Lab, Jason B. Carmel, MD, PhD sits on the CP Research Network Steering Committee. "CP has an expansive definition: an injury to the developing brain that impairs movement. The diversity of the condition makes it difficult to study. The CP Research Network has created a system to collect large amounts of data to answer some of the biggest questions in our field: what is the likely course of CP and which interventions work best for which people?" said Dr. Carmel. "The Network uses the data as a learning health system to develop new ideas, test them in clinical trials or quality improvement projects, and to educate the research and patient communities."
One of the network’s biggest strength is engaging community stakeholders to collectively learn and define the research and care that matters most to them. The result are programs and resources which connects the entire community.
“The CP Research Network is a tremendous resource for the WFCPC and our community,” shared WFCPC Care & Outreach Coordinator Jennifer Pimentel, “I always point new families to the WFCPC to the CP Research Network Cerebral Palsy Toolkit. It is a wealth of information for anyone familiar or new to CP. The MyCP forum is an excellent channel for caregivers, clinicians and community members to share and seek support. We're looking forward to the release of Adult CP Toolkit which will cover key topics our adults often ask me, such as employment and insurance.”
"I am proud to serve as a steering committee member and help Paul and the Network improve our understanding through analysis of large data sets and testing of the ideas produced. We have developed a learning health network that uses clinical information to advance scientific understanding," added Dr. Carmel. "There is no doubt that CP Research Network will be a key contributor to better diagnosis, prognosis, and treatments for people with CP."