Gillette Children’s Cerebral Palsy Institute Is Dedicated to Advancing Research, Care, and Advocacy
Formalizing its commitment to cerebral palsy (CP) care, Gillette Children’s announced its Cerebral Palsy Institute in Fall 2022. Guided by Gillette’s nationally and internationally known leaders in the field of CP, including Patrick Graupman, MD, neurosurgeon, Marcie Ward, MD, pediatric rehabilitation medicine physician, and Tom Novacheck, MD, orthopedic surgeon, the new institute will develop novel research and harness the multidiscilinary power of Gillette providers to ensure children who have CP live a life determined by dreams, not diagnosis.
“For decades, Gillette has been a leader in CP care, research, and advocacy," says Novacheck. "With new findings and new treatments, Gillette is now making an even clearer commitment to making a difference in the care of people with CP in our community and around the world."
“The Cerebral Palsy Institute is an amazing initiative where Gillette has come together and set a goal: We want all these clinicians to do as much as possible for our children with cerebral palsy with all the tools that they need to care for them," Ward says. “We want to do it in the most coordinated fashion as quickly as possible. With this focus, we’ll be able to serve the patients’ and families’ needs most fully.”
Beyond its recognized excellence in pediatric diagnostic, medical, surgical, and rehabilitative care, three pillars set the Cerebral Palsy Institute apart.
Gillette CP research lays a deep foundation of expertise. Because each study is designed with patients in mind (even including them in designing studies as appropriate), research translates to new clinical pathways and opportunities for patients. Gillette research also spans both short-term and long-term outcomes, evaluating current treatment while considering patients’ growth into adulthood. Over the past five years, researchers have completed four long-term outcome studies to observe the effects of the more common CP interventions.
By investigating the issues that affect patients with CP most, like increased risk of falls or pain in nonverbal patients, researchers learn when best practices and treatment recommendations should be updated. This approach gives Gillette providers the data to explain to patients why their care journey looks the way it does.
“Because of our patient-centered research, in clinic visits, we can access and share a patient’s data with them as we discuss their options,” Novacheck explains. “You’d like your own health care to be data-driven, right? With medical technology, that’s becoming increasingly possible, and that’s one of the things that we’ve innovated at Gillette and in the Cerebral Palsy Institute.
Gillette boasts internationally recognized experts from many specialties who work as a single team to provide comprehensive, coordinated, and highly personalized care. The Cerebral Palsy Institute expands the access to multidisciplinary clinics for other types of problems that individuals who have CP face.
CP is a complex condition that can affect many parts of the body. As a result, a child will likely see specialists in neurology, neurosurgery, orthopedics, rehabilitation medicine, sleep medicine, rehabilitation therapies and orthotics, and seating. For many patients and families outside of Gillette, it’s unlikely these different providers in various specialties are sharing their insights and observations and collaborating across disciplines, making it hard for them to navigate their care when recommendations are disparate.
“So much of the world of CP care has been isolated and siloed, which puts the patient and the family in the middle to try to interpret what's going on,” Novacheck says. “It gets very difficult when sometimes those recommendations are in different directions. One of the things that made Gillette unique from the very beginning of my career more than 30 years ago was that it was already doing multispecialty, multidisciplinary clinics.”
Gillette CP specialists work closely with patients, families, primary care providers, and one another to develop treatment plans that meet families where they are on their care journey. Families can access all their CP care needs in one place.
At Gillette, medical intervention is just the beginning. Ultimately, Gillette providers and staff advocate tirelessly to give CP patients the tools they need to feel they are completely equal contributors in their care journey and in the greater community.
“The work at Gillette Children’s is really to help the whole child enter life and do as much as possible,” Ward says. “Medical work is not our only goal. We’ve improved their walking and helped their ability to get about, now where do they want to go with that? Whether it’s riding a bicycle, downhill skiing or waterskiing, fishing, archery, or bow hunting, our goal is to help kids in any pursuit they’re interested in, even if they need assistance or adaptive equipment to do it.”
As the medical teams work to help each patient reach their potential, the advocacy team is working to ensure their rights and needs are respected. From pushing for policy changes to building adaptive playgrounds, championing community support is a big part of Gillette Children’s culture.
“We want the rest of the community—and the rest of the world—to embrace children and adults who have cerebral palsy and other lifelong conditions,” Ward says. “We want them to be accepted in the community just the way the rest of us are with all their gifts and all their abilities.”