ACTC-DS Performance Sites
We are continuously seeking new research collaborators worldwide. We invite you to explore this website or contact us to learn more.
We are continuously seeking new research collaborators worldwide. We invite you to explore this website or contact us to learn more.
Beachwood, Ohio, USA
Indianapolis, IN, USA
Indianapolis, IN, USA
Irvine, California, USA
Irvine, California, USA
Lexington, KY, USA
Lexington, KY, USA
Pittsburgh, PA, USA
St. Louis, MO, USA
Madison, WI, USA
Phoenix, AZ, USA
Nashville, TN, USA
Aurora, CO, USA
Lawrence, KS, USA
Lawrence, KS, USA
San Antonio, TX, USA
Dr. Burke has worked extensively with patients and families suffering with neurodegenerative disorders including Alzheimer’s disease in Down Syndromw. Her area of expertise includes the diagnosis and management of cognitive disorders and the treatment of challenging behavioral and psychiatric disturbances that result from neurological conditions.
In addition to her clinical work, Dr. Burke has led the development of comprehensive multispecialty clinical care models focused on improving the quality of care for individuals with cognitive impairment and improving the diagnosis and management of Alzheimer’s and related dementias in the community.
She is a well-respected researcher having led over 80 clinical trials of investigational pharmacotherapies, neuromodulation, environmental modifications, prevention methods, and novel neuroimaging techniques.
Dr. Zaman is a consultant psychiatrist working with adults with intellectual disability in Cambridgeshire, a neuroscientist, and an associate lecturer at the University of Cambridge. He is part of the Cambridge Intellectual Disability Research Group at the Department of Psychiatry. He undertook higher training in medicine and psychiatry and was awarded a PhD in molecular neurobiology. He was a post-doctoral Wellcome Trust International Travelling Fellow at the Cold Spring Harbor Laboratory, New York. His research work focuses on the role of amyloid, tau, inflammation, and mitochondrial dysfunction in the genesis of cognitive impairment and dementia in people with Down Syndrome. He is part of the ABC-DS (Alzheimer’s disease Biomarker Consortium-Down Syndrome), which aims to understand the natural history of dementia in Down syndrome with the aim of designing clinical trials for preventive treatment. He is interested in understanding the neuronal mechanisms that underlie deficits in learning and memory in people with intellectual disabilities and exploring ways of ameliorating or treating these.
Dr. Lerner is a graduate of the New York State College of Agriculture and Life Science at Cornell University in Ithaca, NY and Cornell University Medical School in New York City. He completed an internship in Internal Medicine at Lenox Hill Hospital in New York City. He then completed a Residency in Neurology (1988-1991) and Fellowship in Behavioral Neurology at University Hospitals and Case Western Reserve University (1991-1993). He is currently Director of the Brain Health and Memory Center at the Neurological Institute of University Hospitals Case Medical Center. He holds the Neurological Institute endowed chair in memory and cognition, and is Professor of Neurology, Case Western Reserve University School of Medicine. He is one of the founders of the Cleveland Brain Health Initiative and a member of the executive committee.
Dr. Lerner is a Behavioral Neurologist with almost three decades experience in treating memory disorders such as Alzheimer’s disease, aging in Down Syndrome and related disorders. He is active in conducting clinical research studies focusing on new diagnostics and treatments for Alzheimer’s disease, and other dementias. Current studies include new dementia prevention studies both by risk factor reduction and use of experimental medications. He represents CWRU on the steering committees of the Alzheimer’s Clinical Trials Consortium and the Alzheimer’s Disease Neuroimaging initiative. The clinical research site at University Hospitals is actively working with the Global Alzheimer’s Platform to promote Brain Health in diverse communities, and accelerate clinical trials in Alzheimer’s disease. His clinical practice is focused on diagnosis and treatment of dementia and behavioral disorders. He has written published extensively in the areas of general Neurology, Alzheimer’s disease and other dementias.
Dr. Fortea combines his research and clinical activities at the Hospital of Sant Pau in Barcelona and the Catalan Foundation for Down Syndrome in Barcelona, Spain. He is the founder and director of the Down Syndrome Unit. This unit runs a pioneering population based health plan for adults with Down syndrome in Catalonia. This program is the foundation for the Down Alzheimer Barcelona Neuroimaging Initiative (DABNI), the largest single center cohort with multimodal biomarker studies to study Alzheimer´s disease pathophysiology in Down syndrome.
Dr. Fortea has extensive experience in clinical practice and in medical research, with a focus on the early diagnosis of neurodegenerative diseases, Alzheimer’s disease and Down syndrome-related Alzheimer’s disease. His expertise is recognized internationally, and is an active participant of the NIA-N Study section, National Institutes of Health (US), the International Scientific Committee of the Jerome Lejeune Foundation (France), as well as at the Clinical Research Committee from the Trisomy 21 Research Society and the Down Syndrome Professional Interest Area, Alzheimer’s Association (US).
Dr. Apostolova’s research focuses on the early symptomatic and presymptomatic stages of Alzheimer’s disease and on the development and validation of sensitive imaging and genetic biomarkers for Alzheimer’s disease and other dementing disorders. Dr. Apostolova is the Principal Investigator of the Longitudinal Early-Onset Alzheimer’s Disease Study (LEADS) – a multisite national consortium focused on early-onset AD, a rare form of Alzheimer’s that affects middle-aged individuals.
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.
Dr. Strydom’s research focuses on mental disorders in adults with neurodevelopmental conditions, including Down syndrome and other genetic disorders.
Dr. Strydom is particularly interested in ageing-related conditions such as dementia in adults with Intellectual Disability and Down syndrome. He is the chief investigator of the LonDownS consortium which consists of several research groups from prominent London universities (KCL, UCL, QMUoL, Birkbeck and the Crick Institute) collaborating on various aspects of Alzheimer’s disease in Down syndrome. One of the important aims of the consortium is to deliver the knowledge, tools and expertise that is necessary to enable clinical trials of treatment to prevent or delay the onset of dementia in individuals with Down syndrome.
He is also involved in developing and evaluating complex interventions in adults with intellectual disabilities such as positive behavior support for challenging behavior, and cognitive behavior therapy for depression, as well as RCTs of medication treatments to reduce morbidity associated with intellectual disabilities.
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.
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.
Dr. Krinsky-McHale has been a research psychologist with the New York State Institute for Basic Research in Developmental Disabilities since 1995, and is the head of the Laboratory of Cognition and Development. She conducts research on cognitive functioning and developmental processes in adults with Down syndrome and in individuals with other forms of intellectual disability (e.g., Williams syndrome). Her laboratory is also examining the neuropsychiatric symptoms that are associated with mild cognitive impairment/Alzheimer’s disease and how these change during disease progression. Dr. Krinsky-McHale has unique expertise in the areas of cognition, visual perception and neuropsychiatric symptomatology, and have been at the forefront of research focused on recognition of the earliest indicators of dementia in adults with Down syndrome.
Dr. Head received a master’s in psychology and a PhD in Neuroscience from the University of Toronto, Canada. She received postdoctoral training at the Institute for Brain Aging & Dementia at the University of California, Irvine. Dr. Head moved to the University of Kentucky in January of 2009 and was a Professor and Associate Director of Education at the Sanders-Brown Center on Aging. Now at the University of California at Irvine, she is a Professor and Vice Chair for Research in the Department of Pathology & Laboratory Medicine. Dr. Head has published over 150 peer reviewed papers, over 30 review papers and book chapters. Dr. Head has dedicated over 20 years to the study of aging and Alzheimer’s disease with a focus on people with Down syndrome.
Dr. Lott is a child neurologist at the University of California, Irvine and CHOC Children’s Hospital. He graduated from Ohio State University College of Medicine and received his training in pediatrics, neurology, and child neurology through Massachusetts General Hospital, Harvard Medical School. He served as a Clinical Research Associate at the National Institute of Child Health and Human Development. He was on the faculty at Harvard Medical School as Clinical Director of the Eunice Kennedy Schriver Center from 1974-1983.
In 1983, Dr. Lott was recruited to the University of California, Irvine where he has been a tenured professor. In 2012, he became Emeritus Professor. He served as Director for the Division of Child Neurology from 1983-2011 and Chairman of the Department of Pediatrics from 1990-2000. He directed the ACGME Child Neurology Residency Program at UCI from 1983-2011. In May 2000, he assumed the title of Associate Dean, Clinical Neuroscience for UCI’s School of Medicine. Currently has directed the Telemedicine program for the UCI Health Sciences. Dr. Lott has been a standing member of the Developmental Biology Study Section at NICHD and has served on many ad-hoc NIH committees.
Dr. Lott’s research interest is focused on development and aging in Down syndrome. He received two national awards for his research and has been commended by the California State Senate for his work on behalf of individuals with intellectual disabilities. In 2016, Dr. Lott received the annual research award from UCI’s Alzheimer’s disease program. He served as Chairman of the Scientific Advisory Board of the National Down Syndrome Society and is a Board member of the Down Syndrome Association of Orange County. Dr. Lott’s research has been supported by the National Institutes of Health, Alzheimer’s Association, and the State of California. Dr. Lott has been cited among the “best doctors” for over 20 years.
For the past 25 years, Dr. Espinosa has investigated novel mechanisms of gene expression control and molecular signaling in human health and disease, making significant contributions to the fields of parasitology, cancer biology, hypoxic signaling, and most recently, trisomy 21. In 2013, he received pilot funding from the Crnic Institute to apply his expertise in functional genomics to the study of Down syndrome. These activities led to the discovery that interferon signaling is consistently activated in multiple cell types with trisomy 21. Follow up studies demonstrated changes in the proteome, metabolome and immune cell repertoire indicative of interferon hyperactivity and increased JAK/STAT signaling in living individuals with Down syndrome. Altogether, these results support the hypothesis that interferon hyperactivity drives many of the developmental and clinical hallmarks of Down syndrome. Furthermore, Dr. Espinosa’s team recently reported the therapeutic benefits of JAK inhibition for autoimmune skin disease in Down syndrome, leading to the recent approval and funding through the INCLUDE Project of the first clinical trial for JAK inhibition in Down syndrome. Given the established role of neuroinflammation in Alzheimer’s disease, including demonstrated roles for interferon signaling in Alzheimer’s disease progression in animal models, this work could be of key relevance to the ACTC-DS mission.
At the Crnic Institute, Dr. Espinosa leads a dynamic and multidisciplinary research portfolio involving over 50 research teams across 25 departments at the University of Colorado. In 2016, Dr. Espinosa launched the Crnic Institute’s Human Trisome Project (HTP, www.trisome.org), a deep pan-omics cohort study of people with Down syndrome. The HTP was envisioned as a discovery accelerator for the field, pairing the generation of pan-omics datasets with deep clinical phenotyping on 1000+ individuals with trisomy 21, and making the data publicly accessible via a user-friendly online platform. In just three years, the HTP biobank has samples from >1500 participants, generated diverse multi-omics datasets, and created the first-ever online platform to explore the impact of trisomy 21 on these multidimensional datasets, called the TrisomExplorer: www.trisome.org/explorer. This project will be a great resource for the ACTC-DS both in terms of recruitment and multi-omics characterization.
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
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.
Dr. Schmitt received his doctoral degree and completed a fellowship at the University of Akron, Ohio. His clinical interests include biostatistics, dementia, and HIV. Schmitt is the Mary Carter Award recipient for his work with patients with Down syndrome and neurodegenerative disease, and is a nationally and internationally renowned expert on neurodegenerative conditions including Alzheimer’s disease. He is a principal investigator and consultant on numerous grants from the NIH and other federal and state funding mechanisms. He has over 30 years of clinical experience in neurocognition.
Dr. Jicha serves as an Associate Center Director and leads the Clinical Core of the UK , NIA-funded Alzheimer’s Disease Center. He also serves as the Medical Director of Kentucky Telecare and directs the Telemedicine Cognitive Clinic at the University of Kentucky, designed to reach out to rural populations across Kentucky for both clinical and research-related activities in the area of AD and related disorders. He is the principle investigator at UK for the National Alzheimer’s Disease Cooperative Study (ADCS) Group, the Alzheimer’s Clinical Trial Consortium (ACTC), serves on the Clinical Task Force and Steering Committee for the National Institute of Aging Alzheimer’s Disease Center Program, and also serves as the immediate past Chair of the American Academy of Neurology Geriatric section, and as the current Chair for the International Alzheimer’s Association Clinical Trials Advancement and Methodology Professional Interest Group. His current research interests lie in the areas of preclinical disease states, mild cognitive impairment, vascular contributions to dementia, and clinical trials of disease modifying therapies for degenerative dementias.
Dr. Handen is a clinical psychologist with over 35 years’ experience as a researcher and clinician in the field of intellectual and developmental disabilities. His research involves some of the first published amyloid PET scan studies with adults with Down syndrome. In 2009, Dr. Handen and his colleagues initiated a NIA-funded, multicenter longitudinal study of amyloid deposition in the Down syndrome population and its impact on cognition. Currently, he is co-principal investigator of the coordinating center for a NIA/NICHD-funded, multicenter U01 study of biomarkers of Alzheimer’s disease in adults with Down syndrome (Neurodegeneration in Adults Down Syndrome – NiAD).
Sarah Savoia received her Master of Medical Science from the Yale School of Medicine. Physician Associate Program and completed her training at the Yale Memory Clinic. Ms. Savoia is now a practicing clinician in cognitive behavioral neurology and 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 investigate for new promising treatments that aim to restore function, with a focus on people with Down syndrome. 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 access to studies and clinical care for previously underrepresented patient populations and to expand our understanding of Alzheimer’s biology to rapidly translate and implement our findings into effective preventive interventions and therapies.
Dr. Christian’s research and mentoring activities focus on developing and translating novel neuroimaging methods and PET radiotracers for the study of human development and neurodegeneration. This involves using neuroimaging to investigate neurochemical changes in the brain and studying novel radioligands to characterize neurotransmitter-protein interactions and how they are influenced by development, genes, environment and aging. He is also the Co-director of the Brain Imaging Lab and Director of the PET Imaging Core for the UW Alzheimer’s Disease Research Center (ADRC). He is currently Co-PI of the Alzheimer’s Biomarker Consortium – Down Syndrome (ABC-DS) project, a multicenter study of the progression of Alzheimer’s disease related biomarkers in adults with Down syndrome.
Dr. Newhouse is the Director of the Center for Cognitive Medicine in the Department of Psychiatry at Vanderbilt University Medical Center that focuses on studies of the cognitive basis of neuropsychiatric disease.
Dr. Newhouse’s research has focused on central cholinergic mechanisms in Alzheimer’s disease and the role of cholinergic receptor systems in normal and disordered cognitive functioning in humans. He has also emphasized the development of novel cholinergic agents for clinical use in cognitive disorders. A second major focus includes studying the interaction of estrogen and related molecules on central cholinergic systems in relation to cognitive and emotional aging through the use of novel pharmacologic-imaging methodologies. Current foci in his lab include the effects of nicotinic and muscarinic mechanisms on cognitive functioning in aging, MCI and Alzheimer’s disease, the effects of nicotinic stimulation in older adults with Down syndrome, the effects of menopause on cholinergic-mediated cognitive performance in older women, and the treatment of mild cognitive impairment (MCI) with nicotinic stimulation. He has funding from NIA, NIMH, and private foundations.
He is a diplomat of the American Board of Psychiatry and Neurology in both General Psychiatry and Geriatric Psychiatry and in 2002 was awarded the American Psychiatric Association Profiles in Courage award. Dr. Newhouse serves as a frequent consultant to pharmaceutical and biotechnology companies in the United States and abroad on central nervous system drug development, clinical trial design for dementia and depression, and clinical nicotinic pharmacology.
Dr. Ances’ research focuses on developing novel neuroimaging biomarkers for neurodegenerative diseases- especially Alzheimer’s disease (AD). He concentrates on functional and structural magnetic resonance imaging and positron emission tomography methods to detect early changes in the brain due to AD, and has pioneered the use of advanced neuroimaging techniques (including ASL and BOLD resting state functional connectivity) to study neurodegenerative diseases. Dr. Ances has assisted collaborators in the United States and abroad in implementing advanced neuroimaging techniques.