The University of Maryland School of Medicine (UMSOM), University of Maryland Medical Center (UMMC), and Tuberous Sclerosis Alliance (TS Alliance) have joined together to launch first-of-a-kind centers in Maryland to treat adults with neurodevelopmental disabilities such as autism.
The two centers — the University of Maryland Center for Adults with Neurodevelopmental Disabilities (UMCAND) and the Tuberous Sclerosis Complex Center of Maryland (TSCCM) — will provide clinical evaluation, care, and treatment for adults with neurodevelopmental conditions such as autism, intellectual disability, epilepsy, and tuberous sclerosis complex (TSC).
“These new centers will focus on the needs of adults. It is a critical service that could ultimately change the lives of many in need who have gone undiagnosed,” said Peter B. Crino, MD, PhD, professor and chair of the Department of Neurology at UMSOM, who will serve as the director of these centers.
Currently there are two regional centers in Maryland that focus on treating autism in children — Kennedy Krieger Institute and the Wendy Klag Center for Autism at Johns Hopkins, but there are no centers for adults with the disorder. These new UM Medicine centers, in partnership with the TS Alliance, would be the first to treat adults and would serve as a bridge from pediatric care to adult care. The UMCAND and TSCCM centers come at a critical time as Maryland has the second-highest rate of autism in the United States.
UMSOM faculty and pediatricians within the University of Maryland Medical System (UMMS) are working with Kennedy Krieger and the Klag Center to determine the best way to transfer or refer their pediatric patients once they reach adolescence to ensure a continuum of quality care.
UMSOM Dean E. Albert Reece, MD, PhD, MBA, said: “Neurodevelopmental disorders are one of the more challenging issues Dr. Crino and other researchers at the University of Maryland School of Medicine are addressing. This collaboration with the University of Maryland Medical Center and the leadership of Dr. Crino is critical as we work to better understand and treat the most complex neurodevelopmental disorders in adults. These new centers are the first in the state of Maryland and will pioneer a path toward better treatment for adults who suffer from these disorders.” Dean Reece also is executive vice president for medical affairs, University of Maryland, Baltimore (UMB), and the John Z. and Akiko K. Bowers Distinguished Professor, UMSOM.
According to data from the Centers for Disease Control and Prevention (CDC), one in 58 individuals in Maryland is diagnosed with an autism disorder.
“By opening these new centers, we are taking an important step forward in connecting people with doctors and services to help them overcome challenges that may be keeping them from living life to its fullest potential,” said Mohan Suntha, MD, MBA, president and CEO of UMMS and the Marlene and Stewart Greenebaum Professor of Radiation Oncology at UMSOM. “Under Dr. Crino’s leadership, the new centers will fill a critical gap in services and allow for better diagnosis, treatment, and care.”
TSC and Fragile X Syndrome (FSX) are seen as the most common genetic disorders linked to autism. At least two children born each day will have TSC, with roughly 50,000 in the United States and 1 million worldwide, according to the TS Alliance.
“The TS Alliance is incredibly grateful to UM Medicine and the state of Maryland for establishing these critically important centers,” said Kari Luther Rosbeck, TS Alliance president and CEO. “Across the country, huge gaps often exist in treating adults with neurodevelopmental disorders like TSC, so Maryland provides a role model for how to best serve these populations.”
The National Institutes of Health estimates that FSX occurs in approximately one in 4,000 males in the United States and one in 8,000 females. Individuals affected by both TSC and FSX can have delayed development of speech and language by age 2. Typically they will have mild to moderate intellectual disability, and they also may have anxiety and hyperactive behavior such as fidgeting or impulsive actions. In addition, seizures are common in both disorders.
Many TSC and FSX cases remain undiagnosed for years or decades due to the relative obscurity of the diseases and the mild form symptoms may take in some people, making it all the more critical to have special treatment centers focused on diagnosing and treating these disorders in adults.
“There is such a huge need for this expertise here in Maryland and, indeed, around the world,” said UMB President Jay A. Perman, MD. “It’s gratifying that we can fill this need, that we can provide adults with neurodevelopmental disabilities excellent care over their lifetimes, while investigating the underlying causes so that, one day, these disabilities might be vanishingly rare.”
Clinical care for patients will be provided at the University of Maryland Rehabilitation and Orthopaedic Institute in Baltimore and also through telemedicine for patients unable to travel or who are located in rural areas such as Maryland’s Eastern Shore.
Crino is a highly regarded expert in tuberous sclerosis complex, and TSCCM will serve as a model for the establishment of disease-specific programs for a broad range of neurodevelopmental disorders. The centers ultimately will expand to provide behavioral treatment and other needed services.
Using the clinic as a portal for discovery, the research goals are to identify genetic causes of autism, epilepsy, and intellectual disability; to better understand and identify environmental risks; and to use precision-medicine to develop new therapies.
Funding and support has been provided by the state of Maryland with the support of Gov. Larry Hogan.
“It is through the efforts of fierce advocates that rare diseases like TSC are getting the attention needed to find cures,” Hogan said. “We were proud to work across the aisle to include $500,000 for this center in our most recent budget, and the state will continue to strongly support this partnership. Now, families who are coping with this disease will have access to the best doctors and international experts, and Maryland will be recognized as a premier center for adult care and research in TSC.”