Also known as Spielmeyer-Vogt-Sjogren-Batten disease, Batten disease is the most common form of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten disease is usually regarded as the juvenile form of NCL, it has now become the term which encompasses all forms of NCL. Batten disease is a congenital, progressive, and terminal neurological disease. Patients with Batten disease have cognitive impairment, loss of developmental milestones, and epilepsy. Sight and hearing may also be impaired.
In 2010, Nationwide Children’s was designated a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), the largest research and support organization in North America for families that have children with Batten disease. Chosen because of its clinical and research history with the disease and its ability to provide comprehensive care for these unique children, Nationwide Children's is one of only a handful of organizations in the U.S. with this designation.
At Nationwide Children's, Batten disease patients are evaluated and cared for by a multidisciplinary team that includes pediatric neurologists, pediatric nurse practitioners, registered nurses, social workers and genetic counselors. Additional consultations are available from pediatric cardiologists, pulmonologists and gastroenterologists.
Emily de los Reyes, MD, a pediatric neurologist, is the lead clinician for Batten Disease at Nationwide Children's.
Physician Referral Information
Pediatric Neurology accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. To make a referral, there are three options:
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