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Research and Clinical Trials

Return to Observance of Tuberous Sclerosis Global Awareness Day Overview

More on Observance of Tuberous Sclerosis Global Awareness Day

Observance of Tuberous Sclerosis Global Awareness Day

NEW YORK (May 15, 2014)

NewYork-Presbyterian/Columbia University Medical Center joins tuberous sclerosis complex (TSC) organizations around the world in observing the third annual TSC Global Awareness Day on May 15, 2014. The rare genetic disorder causes tubers, or noncancerous lesions, to form in vital organs—primarily the brain, heart, skin, kidneys, lungs, and eyes. It is diagnosed in about one of every 6,000 births, affecting one million people worldwide.

TSC can be inherited from a parent or result from a spontaneous genetic mutation. It is often detected at or before birth by the presence of heart lesions, called rhabdomyomas, seen on routine ultrasound. Other patients are identified later in life, when they experience seizures and/or developmental delays. Seizures occur in 70 percent of people with TSC; other symptoms may include abnormal skin growths or skin pigmentation; cognitive impairment, behavioral problems, and autism; lung disease; and kidney problems.

NewYork-Presbyterian/Columbia University Medical Center is designated by the Tuberous Sclerosis Alliance as a Tuberous Sclerosis Clinic for its commitment to and expertise in diagnosing and treating TSC. Children and adolescents receive care at NewYork-Presbyterian/Morgan Stanley Children's Hospital, adults at NewYork-Presbyterian/Columbia. Specialists assess the unique needs of each patient at each point in life to customize a plan of care.

"Our team consists of a group of accomplished subspecialists who can provide comprehensive care to TSC patients," says Dr. James Riviello, director of the NewYork-Presbyterian/Columbia University Medical Center Tuberous Sclerosis Center and chief of child neurology at Morgan Stanley Children's Hospital. "We tailor the management of TSC to each patient's individual needs while following the Tuberous Sclerosis Alliance's consensus guidelines."

Though there is currently no cure for TSC, advances are being made in treating and managing the disorder. Anticonvulsant medications are the first therapy used to control seizures. Patients whose seizures are not well controlled with medication may be candidates for surgery to remove tubers in the brain responsible for the seizures.

Patients also undergo regular surveillance to monitor their health and to see if their TSC has progressed to other organ systems. The NewYork-Presbyterian/Columbia University Medical Center Tuberous Sclerosis Center's collaborating neurologists, neurosurgeons, cardiologists, geneticists, pulmonologists, dermatologists, ophthalmologists, and others work together to manage each patient's health in one location. Transitional care is also provided from childhood to adolescence and then adulthood, to ensure that each patient receives seamless high-quality care.

"TSC patients and their families should feel at ease knowing that all of their medical needs can be addressed in one location with the highest level of care and expertise. And that includes transitional care into adulthood," says Dr. Riviello.

Ongoing TSC research continues to be promising, not only for this disorder, but also for autism, epilepsy, and even cancer, because of a shared genetic pathway. As a Tuberous Sclerosis Alliance-designated clinic, NewYork-Presbyterian/Columbia's Tuberous Sclerosis Center will be able to strengthen its research program by offering patients the opportunity to participate in clinical trials of promising new approaches.

NewYork-Presbyterian Hospital/Columbia University Medical Center

NewYork-Presbyterian Hospital/Columbia University Medical Center, located in New York City, is one of the leading academic medical centers in the world, comprising the teaching hospital NewYork-Presbyterian and its academic partner, Columbia University College of Physicians and Surgeons. NewYork-Presbyterian/Columbia provides state-of-the-art inpatient, ambulatory and preventive care in all areas of medicine, and is committed to excellence in patient care, research, education and community service. NewYork-Presbyterian Hospital also comprises NewYork-Presbyterian Hospital/Weill Cornell Medical Center, NewYork-Presbyterian/Morgan Stanley Children's Hospital, NewYork-Presbyterian Hospital/Westchester Division, NewYork-Presbyterian/The Allen Hospital and NewYork-Presbyterian/Lower Manhattan Hospital. NewYork-Presbyterian is the #1 hospital in the New York metropolitan area and is consistently ranked among the best academic medical institutions in the nation, according to U.S.News & World Report.

Columbia University Medical Center

Columbia University Medical Center provides international leadership in basic, preclinical, and clinical research; medical and health sciences education; and patient care. The medical center trains future leaders and includes the dedicated work of many physicians, scientists, public health professionals, dentists, and nurses at the College of Physicians and Surgeons, the Mailman School of Public Health, the College of Dental Medicine, the School of Nursing, the biomedical departments of the Graduate School of Arts and Sciences, and allied research centers and institutions. Columbia University Medical Center is home to the largest medical research enterprise in New York City and State and one of the largest faculty medical practices in the Northeast. For more information, visit www.cumc.columbia.edu or www.columbiadoctors.org.

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