Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research.
Journal: Alzheimer's & dementia : the journal of the Alzheimer's Association
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Affiliated Institutions:
John P. Hussman Institute for Human Genomics, University of Miami, Miller School of Medicine, Miami, Florida, USA.
Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Department of Neurosciences, University of California San Diego, La Jolla, California, USA.
Behavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
Parkwood Institute Research, London, London, Ontario, Canada.
IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Waurn Ponds, Victoria, Australia.
Macquarie Medical school, Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie Park, New South Wales, Australia.
Sant Pau Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain.
Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, North Holland, The Netherlands.
Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Oak Street Health - North City, St. Louis, Missouri, USA.
Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Grupo de Neurociencias de Antioquia, Universidad de Antioquia, Medellín, Antioquia, Colombia.
Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India.
Institute of Neurological Sciences and Psychiatry, Hacettepe University, Sıhhiye/Altindag, Ankara, Turkey.
CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
Depts. of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, Saint Louis, Missouri, USA.
Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Brain & Mind Centre and the School of Psychology, The University of Sydney, Camperdown, New South Wales, Australia.
Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.
Laboratoire Mémoire Cerveau et Cognition (UR ), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France.
Danish Dementia Research Center, Copenhagen University Hospital, Rigshospitalet, and Department of Phychology, University of Copenhagen, Copenhagen, Denmark.
Department of Cell Biology and Genetics, University of Lagos, Tafawa Balewa, Lagos, Nigeria.
Department of Anatomy and Medical Imaging, University of Auckland, Auckland, New Zealand.
Department of Neurology, Ghent University Hospital, Ghent, Belgium.
Geroscience Center for Brain Health and Metabolism (GERO), Ñuñoa Santiago, Santiago, Chile.
Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
Department of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.
Abstract summary
Frontotemporal dementia (FTD) is one of the leading causes of young-onset dementia before age 65, typically manifesting as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). Although FTD affects all populations across the globe, knowledge regarding the pathophysiology and genetics derives primarily from studies conducted in North America and Western Europe. Globally, biomedical research for FTD is hindered by variable access to diagnosis, discussed in this group's earlier article, and by reduced access to expertise, funding, and infrastructure. This perspective paper was produced by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) and discusses the field's current status on the cross-cultural aspects of basic and translational research in FTD (including that focused on epidemiology, genetics, biomarkers, and treatment). It subsequently provides a summary of gaps and needs to address the disparities and advance global FTD biomedical research.
Authors & Co-authors:
Nuytemans Karen K
Franzen Sanne S
Broce Iris J IJ
Caramelli Paulo P
Ellajosyula Ratnavalli R
Finger Elizabeth E
Gupta Veer V
Gupta Vivek V
Illán-Gala Ignacio I
Loi Samantha M SM
Morhardt Darby D
Pijnenburg Yolande Y
Rascovsky Katya K
Williams Monique M MM
Yokoyama Jennifer S JS
Acosta-Uribe Juliana J
Akinyemi Rufus R
Alladi Suvarna S
Ayele Biniyam A BA
Ayhan Yavuz Y
Bourdage Renelle R
Castro-Suarez Sheila S
de Souza Leonardo Cruz LC
Dacks Penny P
de Boer Sterre C M SCM
de Leon Jessica J
Dodge Shana S
Grasso Stephanie S
Ghoshal Nupur N
Kamath Vidyulata V
Kumfor Fiona F
Matias-Guiu Jordi A JA
Narme Pauline P
Nielsen T Rune TR
Okhuevbie Daniel D
Piña-Escudero Stefanie S
Ruiz-Garcia Ramiro R
Ryan Brigid B
Scarioni Marta M
Slachevsky Andrea A
Suarez-Gonzalez Aida A
Tee Boon Lead BL
Tsoy Elena E
Ulugut Hulya H
Onyike Chiadi U CU
Babulal Ganesh M GM
Study Outcome
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