Roughly 10 percent of American households live with an individual with a neurodevelopmental disability, every day grappling with the emotional, logistical, and financial burdens brought on by these conditions.
Specifically, 2010 data from the U.S. Census shows that approximately 1.2 million American adults, or 0.5 percent of the population, had an intellectual disability or mental retardation, while 0.4 percent of Americans over the age of 18 — 944,000 people — had some measure of cognitive disability. And according to recent data published by the American Community Survey, 3.8 percent of children in metropolitan areas and 4.8 percent outside metropolitan areas have a “cognitive difficulty.”
The Hospital’s Neurodevelopmental Disabilities Training Program (NDTP) was established as a joint initiative of The Children’s Hospital of Philadelphia and the University of Pennsylvania in 1998 and is supported by the National Institutes of Neurologic Disorders and Stroke (NINDS). Children’s Hospital neuroscientist Michael Robinson, PhD, was one of the co-founders and currently serves as the director of the program, which recently received another five years of funding totaling more than $1.7 million from NINDS.
“These disorders have diverse genetic and environmental causes, but they share many co-morbidities. For example, seizures or anxiety disorders are frequent symptoms of Fragile X and other autism spectrum disorders. Therefore the rationale was to bring together researchers from diverse training backgrounds and scientific expertise to both advance interdisciplinary training and encourage collaboration,” said Dr. Robinson.
Support for the program also comes from the L. Morton Morley Funds of the Philadelphia Foundation and The Children’s Hospital Research Institute. These additional sources help support the program’s administration and provide supplements to encourage clinicians to engage in full-time research training after they have completed their clinical training.
“Even at this time of tight fiscal constraint by the federal government, the societal, human, and economic costs of intellectual disability provide ample justification for continued training. It is these trainees who provide hope for the future,” Dr. Robinson added.
An Emphasis on Mentorship
The NDTP pairs trainees with faculty mentors, who provide advanced research training designed to help the trainees achieve their career goals. CHOP faculty members who have served as mentors in the past include Douglas Wallace, PhD director of the Center for Mitochondrial and Epigenomic Medicine; Douglas Coulter, PhD director of CHOP’s Epilepsy Research Lab; and Robert Schultz, PhD director of the Center for Autism Research. In all, 31 different mentors have supervised trainees.
In addition to working closely with a mentor, NDTP trainees attend lectures and seminars, take courses, participate in clinical practica, and develop other skills, such as grant writing. The NDTP has three broad areas of focus: chromosomal/genetic causes of neurodevelopmental disabilities, acquired/environmental causes, and neurobehavioral disorders, Dr. Robinson said.
Trainees who have taken part in the program come from a variety of disciplines, including neurology and neuroscience, physics, and clinical psychology. To date, the NDTP has enrolled 36 trainees, which includes a mix of MDs, PhDs, and MD/PhDs. Of the 26 trainees who have completed training, 13 have taken faculty positions at prestigious academic institutions across the country and continue their studies.
For example, Carrie Bearden, PhD, who was supported by the program from 2001 to 2002, is now an associate professor of Psychology at the University of California, Los Angeles, and is recognized internationally for her work studying contributions of genetic and environmental factors to mood disorders in adolescents. More recently, Adam Woods, PhD who was supported from 2010 until June of 2013, landed a faculty position at the University of Florida. All of the graduates continue to further research or treatment in a variety of positions, including at pharmaceutical firms.
“It is gratifying to support such a talented group of individuals. Like a parent, I’m proud of the accomplishments of these trainees.” Dr. Robinson noted.
The program supports six trainees at any one time, current trainees include: Nayla Chaijale, PhD; Jessica Panzer, MD, PhD; Lucia Peixoto, PhD; Jill See, PhD; and Chia-Yen Wu, PhD. Dr. Chaijale, who received her PhD from Drexel University in 2010, is studying how chronic stress changes brain development with Rita Valentino, PhD. Dr. Panzer, who received her MD/PhD degrees from the University of Pennsylvania, has been studying contributions of the immune system to neurobehavioral disorders with David Lynch, MD, PhD.
Dr. Peixoto, who received her PhD from the University of Pennsylvania, has been learning how the environment modifies genetic profiles during learning while working with Ted Abel, PhD. Dr. See, who also received her PhD from the University of Pennsylvania, has been working with Akiva Cohen, PhD, to examine the efficacy of a new therapy to limit the damage associated with traumatic brain injury. And last but not least, Dr. Wu, who received her PhD from the University of Delaware in 2011, is working with Robert Kalb, MD to test possible approaches to limiting motor neuron loss observed in spinal muscular atrophy.
“We try to emphasize strong mentoring, and focus on supporting the trainees as they move forward in their careers,” Dr. Robinson said.
The Neurodevelopmental Disabilities Training Program is one of many educational programs offered by Children’s Hospital, and one of several geared toward research. Other training programs’ areas of focus include cardiology, diabetes research, epidemiology and outcomes research, pediatric hematology, and genetics. To learn more, see the CHOP Research Education page.