Down Syndrome Center Newsletter - Spring 2013
From the Director – Welcome Dr. Bay
The Down Syndrome Clinic and Research Center is excited to announce that Dr. Mihee Bay will be joining us in the Down Syndrome Clinic. Dr. Bay attended The Johns Hopkins University and went to medical school at State University of New York at Brooklyn. She completed her pediatric residency at Bay State Medical Center, Tufts School of Medicine. After finishing her residency, she came to Kennedy Krieger, where she completed the neurodevelopmental disabilities fellowship program.
Dr. Bay grew up in South Korea, and first became interested in Down syndrome as a high school student volunteer with the Special Olympics. Dr. Bay enjoys traveling, reading, exploring international cuisines, and spending quality time with her family. She currently lives with her husband and two sons, who are 6 years and 11 months old, in Howard County, Maryland.
Dr. Bay’s role in the Down Syndrome Clinic will be the evaluation of infants and children.
Weight Management and Nutrition
The Weight Management Program at Kennedy Krieger Institute is dedicated to the management of patients with disabilities who are overweight or obese. The program provides comprehensive nutrition assessment, education, and treatment for overweight and obese patients and their families. Individuals will be referred to additional services, such as physical therapy, occupational therapy, and behavioral psychology, when indicated. Our goal is to provide patients and their caregivers the skills needed to help them develop healthy lifelong habits, resulting in improved weight and decreased co-morbidities.
A nutritionist and social worker are also developing a weight management group for older teens and adults with Down syndrome. This weekly group will partner nutrition education with cognitive behavioral therapy in a supportive environment. Group members will participate in fun, interactive games and activities designed to promote healthy eating habits, with the secondary goal of achieving a healthy weight.
For more information about the Weight Management Program or the weekly group, please contact us at 443-023-2730.
Current Research Initiatives at Kennedy Krieger – CURRENTLY RECRUITING
A 20-week double blind placebo controlled clinical trial to evaluate the safety and efficacy of rivastigmine in children and adolescents (10 to 17 years) with Down syndrome.
Kennedy Krieger Institute and Duke University are currently recruiting participants with Down syndrome (ages 10 to 17). The purpose of the study is to determine if an investigational medication that is FDA-approved for Alzheimer’s disease helps to improve memory, speech, and language function in children and adolescents with Down syndrome. The study consists of four visits, and the participant’s family will receive $25 per visit to help with the cost of travel. The study is free, and you will be paid to participate. For more information, please contact Cathleen Weadon at 443-923-9140.
Having a family member with Down syndrome is a unique and very personal journey. Your financial gift in support of our work helps our patients and their families unlock their greatest potential. Your financial support ensures that children and adults with complex conditions can participate in person-centered studies to advance the treatment options we are able to offer.
New Articles/ Recent Publications
Sedaghat, A. R., R. B. Flax-Goldenberg, B. Gayler, G. Capone, and S. Ishman. (2012). "A case-control comparison of lingual tonsillar size in children with and without Down syndrome." Laryngoscope 122(5): 1165-1169.
G. Capone (2011) Pharmacotherapy for children with Down syndrome. Chapter 7 In: Neurocognitive Rehabilitation in Down Syndrome: The Early Years (Eds. J. Rondal, J. Perera and D. Spiker) Cambridge University Press, Cambridge. 237pp
NIH establishes Down syndrome patient registry
Registry connects individuals with Down syndrome to researchers
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers, and parent groups. The National Institutes of Health has awarded a contract to Patient Crossroads–a company that has created patient-centric registries for muscular dystrophy and many rare disorders—to operate the registry.
Individuals with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NICHD (Eunice Kennedy Shriver National Institute of Child Health and Human Development), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Development of a patient registry was a leading recommendation of the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
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