An eye toward tomorrow
Through outreach and assessment, Nemours is able to gauge the current and impending health needs of children. Through investments in research and discovery, Nemours is part of innovative collaborations, finding new ways to solve challenges. By attracting and retaining some of the world’s top pediatric specialists, Nemours enables patients to benefit from new techniques and next-generation technologies. Nemours will continue to be an active participant in shaping the future of children’s health — today and for the tomorrows yet to come.
The Future Is Now
To fully realize a healthy future state, Nemours, along with its collaborators, must continue to bring child health to the forefront — through innovations, advocacy, investment and education. By working together toward common goals, progress toward better health for all children will occur more consistently and rapidly.
Getting ahead of a steep curve
It is estimated that an infant experiencing neonatal abstinence syndrome is born every 15 minutes in the U.S. While these newborns are carefully monitored shortly after birth, much is unknown about longitudinal health outcomes once they transition home. For mothers with opioid use disorder, many challenges threaten engagement in pediatric primary care, including stigma, child custody concerns, housing instability and mental health issues. Gaps in knowledge persist as to the adequacy of well child care (WCC) for these children.
Neera Goyal, MD, general pediatrician and researcher at Nemours, has focused her research on optimizing pediatric primary care for mothers and infants affected by substance abuse disorders. Recently, Dr. Goyal was awarded an ACCEL pilot grant funded by the Delaware Center for Translational Research Program along with supplemental funding from the National Institutes of Health. This study will review PEDSnet data from 35 Nemours primary care sites across three states for children born between 2011 and 2016. Specifically, the study will look at 1) the receipt of recommended WCC visits, frequency of visits and usage of opioids during primary care; 2) diagnoses during primary care, developmental delays or other conditions requiring specialty care; and 3) weight-gain patterns.
The results will be used to inform the design and implementation of a large scale, national study using PEDSnet data from all eight participating institutions. Further research may also focus on specific interventions to address barriers to primary care for these families.
Innovation Ecosystems
Nemours’ two freestanding children’s hospitals in Wilmington, Del. and Orlando, Fla. are in close proximity to two major hubs of innovation and collaboration.
The DuPont Experimental Station and Lake Nona Medical City both draw interest from public and private investors, venture philanthropists, science and biotech start-ups, and educational institutions. Exciting partnerships and new possibilities abound to impact health and well-being.
DUPONT EXPERIMENTAL STATION
Nemours | DuPont | University of Delaware
Watch the opening of the Nemours Biomedical Research Center
LAKE NONA MEDICAL CITY
UF Research & Academic Center | VA Medical Center | USTA | Sandford Burnham | Nemours | Guidewell Innovation Center
Learn more about Lake Nona Medical City.
A community-driven investment
Emotional and behavioral health are critical components of a child’s development. Addressing these concerns as early as possible results in better adjustment and long-term outcomes. A 2016 Community Health Needs Assessment conducted by Nemours identified child mental health services as one of the biggest needs across the Delaware Valley. Committed to improving access, Nemours has hired more than 25 pediatric psychologists, psychiatrists and therapists during the last two years. These behavioral health professionals have integrated their services within all Nemours specialties, and a child psychologist is now embedded in every Nemours primary care location. Nemours is able to ensure that the mental, emotional and social needs of all children and families are being identified and addressed quickly.
The number of children on the autism spectrum has increased 100 percent in the last decade. Today, Nemours/Alfred I. duPont Hospital for Children (N/AIDHC) cares for nearly 2,000 children and teens with autism, as well as conducts research, training and advocacy. During fall 2018, Nemours opened a new space dedicated to behavioral health, developmental medicine and its Swank Autism Center.
The space, designed in partnership with families, houses the clinical specialists and features special therapy areas for eating and toileting, a family resources room, a variety of sensory-friendly waiting areas, observation galleries, a conference room for community collaborations, and an education suite for residents and fellows training in these specialties.
The Swank Autism Center features a full-size kitchen for feeding therapy, where parents can prepare meals for their children and learn how to help them consume a wider variety of foods.
In addition to boosting PRESENT OUTCOMES for child health, we must anticipate FUTURE DEMANDS for care, services and capabilities if we are to REALIZE the potential for GENERATIONAL IMPACT.
New Promise
Led by Allison Aguado, MD, Nemours interventional radiologist, a study published in the November 2018 issue of Pediatric Blood & Cancer finds the procedure known as TARE-Y90 (a novel, targeted radiation treatment) is a feasible option for children with liver cancer that is resistant to chemotherapy and cannot be removed surgically.
TARE-Y90 has been shown effective in treating the most challenging liver cancer; it is also less toxic than current options and could facilitate a cure. The multidisciplinary Liver Tumor Treatment Team at Nemours will be investigating how TARE-Y90 can be introduced earlier, with chemotherapy to help reduce tumor size, providing better surgical treatment options and improved prognosis.
Watch Blakleigh’s Journey
Ruby wears an insulin pump and checks her blood sugar up to 10 times a day. She was only 4 years old when her parents began to see symptoms of T1D. Through their journey from diagnosis to education and ongoing treatment at Nemours, Ruby has never been alone. Her clinical team, including internationally renowned pediatric endocrinologist and researcher Nelly Mauras, MD, has surrounded their family with support and hope.
“For us, the bionic artificial pancreas trial brought a giddy hope that Ruby might one day live a different life,” says Annie, Ruby’s mom. “I’m already gaining peace of mind knowing this technology may be available by the time she enters college.”
Hope inches closer for children with T1D
On average, children with type 1 diabetes (T1D) check their blood sugar 10 times a day. That means families have increased responsibility and usually less sleep. With the goal of dramatically changing the standard of care for diabetes, the Nemours endocrinology team in Jacksonville, Fla. has been deeply involved with clinical research.
Last summer, investigators at the Nemours Children’s Health System in Jacksonville, led by Dr. Nelly Mauras, local principal investigator, enrolled children in an NIH-funded clinical trial for the iLet® — a novel closed-loop insulin delivery system that delivers insulin based on the speed of rise and fall of blood sugars, i.e., an artificial pancreas. Nemours was just one of four trial sites in the U.S. and the only site for participants aged 6 to 11 with T1D. The iLet device, designed by Dr. Ed Damiano from Boston University, combines the functions of a continuous glucose monitor and insulin pump, and “learns” the patterns of the wearers’ blood sugar levels to continuously adjust and predict future fluctuations. The iLet operates autonomously, but shares data with children, parents and the clinical team via Bluetooth technology to ensure efficient monitoring. The Nemours study was conducted as a “mini-camp” so all participants had similar activity levels over two weeks. Children were randomized to use the iLet for one week and rely on their usual care for the other week, to determine if the iLet provided better management of their condition. The device will be further refined and studied before it becomes available commercially.
Pediatric Moneyball
In October 2018, Nemours convened more than 125 attendees from 70 leading organizations, including Abbott, Aetna, Reebok International, Child Care Aware, Kellogg Foundation, The Pew Charitable Trusts and The Urban Institute, for the inaugural Pediatric Moneyball conference in Washington, D.C.
- Keynote speakers Walter Isaacson and General Colin Powell, USA (Ret.) headlined the day-long conference that focused on the relationship between children’s health and America’s future as a global leader.
- Attendees explored the economics of pediatrics, effecting change through population health, and the challenges and opportunities for innovation in children’s health.
- Read the Report from Nemours’ first Pediatric Moneyball Conference.
