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Alzheimer's Clinical Trials Consortium Down Syndrome

Alzheimer's Clinical Trials Consortium Down Syndrome

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Jeff Burns, MD, MS

January 18, 2023 by

Jeffrey M. Burns, MD, MS is the Edward H. Hashinger Professor of Medicine and the Co-Director of the University of Kansas Alzheimer’s Disease Research Center (KU ADRC) ), one of 33 nationally designated centers in the country.  Dr. Burns also directs the Department of Neurology’s Neurocognitive Division, the Clinical and Translational Science Unit, and the KU ADRC’s Clinical Core, which is a site for the ADCS and ATRI national trial networks.

Dr. Burns started the Alzheimer’s clinical research program at the University of Kansas Medical Center in 2004. His education includes a BA (English and Japanese) from the University of Notre Dame, medical school at the University of Kansas Medical Center, neurology residency at the University of Virginia, and a post-doctoral fellowship in Alzheimer’s at Washington University in St. Louis. He then returned to his hometown of Kansas City to start the Alzheimer’s clinical program to stimulate and support AD and aging research locally while pursuing research investigating how various lifestyle factors influence brain aging and AD. The program has grown into a vibrant research and training environment for AD and brain aging research. Dr. Burns has been continuously funded as a PI by the NIH since 2005 for work focused on how various lifestyle factors influence brain aging and AD progression. 

Lauren Ptomey, PhD

January 18, 2023 by

Dr. Ptomey’s primary research focus is the use of technology for the promotion of weight management and physical activity in individuals with intellectual disabilities including Down syndrome. Her secondary research focus is the prevention of Alzheimer’s Disease in adults with Down syndrome. Dr. Ptomey has more than a decade of experience conducting clinical trials in individuals with Down syndrome. She conducted the largest and longest weight management trials for adults and adolescents with intellectual disabilities, and currently has 2 NIH funded trials examining the impact of lifestyle factors on the development of Alzheimer’s Disease in adults with Down syndrome. Additionally, she is the Co-Director of the Down Syndrome Cohort at the University of Kansas Alzheimer’s Disease Research Center

Jill Fodstad, PhD

September 9, 2022 by

Dr. Fodstad is a licensed clinical psychologist and board-certified doctoral-level behavior analyst. Her clinical and research focus in on the assessment and treatment co-occurring neuropsychiatric conditions in individuals with autism, intellectual disability, and other developmental disorders. She is the Director of the multidisciplinary Down Syndrome Lifespan Psychiatry Clinic at the Indiana University Health Neurosciences Center, serving both children and adults, with a specific focus developmental regression and catatonia.

Sarah Savoia, PA-C

August 16, 2022 by

Sarah Savoia, PA-C, is a practicing clinician in cognitive behavioral neurology, who completed her training at Yale Medicine, and is now an assistant professor in the Department of Neurology at UT Health San Antonio. Her clinical and research focus at the Glenn Biggs Institute for Alzheimer’s & Neurodegenerative Disease is to transform dementia care management practices for both patients and their caregivers and to help investigate for new promising treatments that aim to restore function. As a National Institute on Aging (NIA)-designated Alzheimer’s Disease Research Center in South Texas, we are collaborating with other institutions and community stakeholders to improve previously underrepresented patient populations’ access to studies and clinical care, including those with Down Syndrome, to expand our understanding of Alzheimer’s biology and to rapidly translate and implement our findings into effective preventive interventions and therapies.

Diana Rosas, MD

November 11, 2021 by

Dr. H. Diana Rosas is an adult neurologist at Massachusetts General Hospital (MGH), Harvard Medical School (HMS). She graduated from the University of Chicago Pritzker School of Medicine and completed her training in Neurology and a post-doctoral fellowship in Memory Disorders, at MGH. She has been on the faculty since 1997 and is currently an Associate Professor in the Departments of Neurology and Radiology/Athinoula Martinos Center at MGH/HMS.

She is the Director of the MGH MIND Clinic, a multi-disciplinary clinic that supports patients with neurodegenerative disorders and Co-Director of the Aging & Developmental Disabilities Clinic, which assesses and supports adults with Down syndrome, based at McLean Hospital. For more than 20 years, she has been actively involved in the design and implementation of clinical trials using medications aimed at helping treat symptoms or slowing the progression of neurological disorders.

For the past 18 years, Dr. Rosas has been the Director of the Center for Neuroimaging of Aging and Neurodegeneration, a translational clinical research program funded by the National Institutes of Health, that focuses on developing neuroimaging biomarkers to understand changes that occur in the brain as part of normal aging and which may be accelerated in neurodegenerative diseases. She is an active member of the Alzheimer’s Biomarker Consortium-Down Syndrome and is involved with several other initiatives focusing on issues related to aging in Down Syndrome.

Florence Lai, MD

November 11, 2021 by

Dr. Lai graduated with honors from the University of Pennsylvania School of Medicine and is board certified in Neurology and Psychiatry with special qualifications in Child Neurology. She trained in Pediatrics at the Albert Einstein Hospital/Jacobi Medical Center and finished a Child Neurology residency at Boston University/Boston City Hospital. She served as medical director of the Fernald Medical program of the Eunice Kennedy Shriver Center where she headed a teaching program in developmental disabilities for Neurology and Pediatrics residents and was honored with a teaching award. It was at EKS that she developed her keen interest in adults with Down syndrome and published a large prospective study of Alzheimer disease in Down syndrome in 1989, considered a “seminal” paper.

Dr. Lai founded the Aging and Developmental Disabilities Clinic at McLean/Massachusetts General Hospitals in 1994, devoted mainly to adults with Down syndrome who have an especially high risk for Alzheimer disease, and has personally evaluated and followed more than 750 patients. She was chosen to pilot an APOE genotyping study in adults with Down syndrome and published its results.

In addition to consulting on several federal studies on Down syndrome, Dr. Lai was the site PI for the first clinical trial in adults with Down syndrome using Vitamin E as a potential treatment for Alzheimer disease, and recruited over 70 participants of a total 350 among 24 sites. She is completing five years as the MGH site PI of the NIH study “Biomarkers of Alzheimer Disease in Adults with Down syndrome” and is active on the Clinical and Neuropathology cores. Dr. Lai also continues her pediatric neurology role in leading the MGH Learning Disorders Clinic devoted to children and young adults with learning disabilities and ADHD and derives great pleasure in their academic successes.

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