Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research-Reference-Cited by-同舟云学术

Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research

Published:2023-06-03 Issue:12 Volume:19 Page:5817-5836
ISSN:1552-5260
Container-title:Alzheimer's & Dementia
language:en
Short-container-title:Alzheimer's & Dementia

Author:

Franzen Sanne¹,Nuytemans Karen²,Bourdage Renelle¹³,Caramelli Paulo⁴,Ellajosyula Ratnavalli⁵⁶,Finger Elizabeth⁷⁸⁹,Illán‐Gala Ignacio¹⁰¹¹,Loi Samantha M.¹²¹³,Morhardt Darby¹⁴,Pijnenburg Yolande¹⁵¹⁶,Rascovsky Katya¹⁷,Williams Monique M.¹⁸,Yokoyama Jennifer S.¹⁹²⁰,Alladi Suvarna²¹,Ayhan Yavuz²²,Broce Iris¹⁹²³,Castro‐Suarez Sheila²⁴²⁵,Coleman Kristy⁷,de Souza Leonardo Cruz²⁶,Dacks Penny A.²⁷,de Boer Sterre C. M.¹⁵¹⁶,de Leon Jessica¹⁹,Dodge Shana²⁷,Grasso Stephanie²⁸,Gupta Veer²⁹,Gupta Vivek³⁰,Ghoshal Nupur³¹,Kamath Vidyulata³²,Kumfor Fiona³³,Matias‐Guiu Jordi A.³⁴,Narme Pauline³,Nielsen T. Rune³⁵,Okhuevbie Daniel³⁶³⁷,Piña‐Escudero Stefanie D.¹⁹²⁵,Garcia Ramiro Ruiz⁷⁹³⁸,Scarioni Marta¹⁵³⁹,Slachevsky Andrea⁴⁰⁴¹⁴²⁴³,Suarez‐Gonzalez Aida⁴⁴,Tee Boon Lead¹⁹²⁵⁴⁵,Tsoy Elena¹⁹²⁵,Ulugut Hülya¹⁵¹⁶¹⁹,Babulal Ganesh M.⁴⁶⁴⁷⁴⁸⁴⁹,Onyike Chiadi U.³²,

Affiliation:

1. Department of Neurology and Alzheimer Center Erasmus MC University Medical Center Rotterdam the Netherlands

2. John P. Hussman Institute for Human Genomics and Dr. John T. Macdonald Department of Human Genetics University of Miami, Miller School of Medicine Miami Florida USA

3. Laboratoire Mémoire Cerveau et Cognition (UR 7536) Institut de Psychologie Université Paris Cité Boulogne‐Billancourt France

4. Behavioral and Cognitive Neurology Research Group Faculdade de Medicina Universidade Federal de Minas Gerais Belo Horizonte (MG) Brazil

5. Manipal Hospitals Bangalore and Annasawmy Mudaliar Hospital Bangalore India

6. Manipal Academy of Higher Education (MAHE) Manipal India

7. Parkwood Institute Research London Ontario Canada

8. Robarts Research Institute University of Western Ontario London Ontario Canada

9. Department of Clinical Neurological Sciences Schulich School of Medicine and Dentistry University of Western Ontario London Ontario Canada

10. 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

11. Centro de Investigación en Red‐Enfermedades Neurodegenerativas (CIBERNED) Barcelona Spain

12. Neuropsychiatry Royal Melbourne Hospital Parkville Victoria Australia

13. Department of Psychiatry University of Melbourne Parkville Victoria Australia

14. Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine Northwestern University Feinberg School of Medicine Chicago Illinois USA

15. Alzheimer Center Amsterdam Neurology Vrije Universiteit Amsterdam Amsterdam UMC location VUmc Amsterdam the Netherlands

16. Amsterdam Neuroscience Neurodegeneration Amsterdam the Netherlands

17. Department of Neurology and Penn Frontotemporal Degeneration Center University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA

18. St. Louis Oak Street Health St. Louis Missouri USA

19. Memory and Aging Center Department of Neurology Weill Institute for Neurosciences University of California San Francisco California USA

20. Department of Radiology and Biomedical Imaging University of California San Francisco California USA

21. National Institute of Mental Health and Neurosciences Bangalore India

22. Faculty of Medicine Department of Psychiatry Hacettepe University Ankara Turkey

23. Department of Neurosciences University of California, San Diego La Jolla California USA

24. CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso Instituto Nacional de Ciencias Neurológicas Lima Peru

25. Global Brain Health Institute University of California San Francisco, San Francisco, California, USA and Trinity College Dublin Ireland

26. Department of Internal Medicine Faculdade de Medicina Universidade Federal de Minas Gerais Belo Horizonte Brazil

27. The Association for Frontotemporal Degeneration King of Prussia Pennsylvania USA

28. Speech Language and Hearing Sciences The University of Texas at Austin Austin Texas USA

29. IMPACT—The Institute for Mental and Physical Health and Clinical Translation School of Medicine Deakin University Geelong Victoria Australia

30. Macquarie Medical School Faculty of Medicine Health and Human Sciences Macquarie University Sydney New South Wales Australia

31. Departments of Neurology and Psychiatry Knight Alzheimer Disease Research Center Washington University School of Medicine St. Louis Missouri USA

32. Department of Psychiatry and Behavioral Sciences The Johns Hopkins University School of Medicine Baltimore Maryland USA

33. Brain & Mind Centre and the School of Psychology The University of Sydney Sydney New South Wales Australia

34. Department of Neurology Hospital Clinico San Carlos San Carlos Institute for Health Research (IdiSSC) Universidad Complutense Madrid Spain

35. Danish Dementia Research Center Department of Neurology Copenhagen University Hospital ‐ Rigshospitalet Copenhagen Denmark

36. Department of Cell Biology and Genetics University of Lagos Lagos Nigeria

37. Department of Comparative Biosciences University of Wisconsin–Madison Madison Wisconsin USA

38. National Institute of Neurology and Neurosurgery Mexico City Mexico

39. Department of Neurology Ghent University Hospital Ghent Belgium

40. Geroscience Center for Brain Health and Metabolism (GERO) Santiago Chile

41. Neuropsychology and Clinical Neuroscience Laboratory (LANNEC) Physiopathology Department – Intitute of Biomedical Sciences (ICBM) Neuroscience and East Neuroscience Departments Faculty of Medicine University of Chile Santiago Chile

42. Memory and Neuropsychiatric Center (CMYN) Memory Unit Neurology Department Hospital del Salvador and Faculty of Medicine University of Chile Santiago Chile

43. Servicio de Neurología Departamento de Medicina Clínica Alemana‐Universidad del Desarrollo Santiago Chile

44. Dementia Research Centre UCL Queen Square Institute of Neurology University College London London UK

45. Department of Neurology Dyslexia Center University of California San Francisco California USA

46. Department of Neurology Washington University in St. Louis St. Louis Missouri USA

47. Institute of Public Health Washington University in St. Louis St. Louis Missouri USA

48. Department of Psychology Faculty of Humanities University of Johannesburg Johannesburg South Africa

49. Department of Clinical Research and Leadership The George Washington University School of Medicine and Health Sciences Washington District of Columbia USA

Abstract

AbstractFrontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

Funder

Instituto de Salud Carlos III

Rainwater Charitable Foundation

Global Brain Health Institute

National Institute on Deafness and Other Communication Disorders

Alzheimer's Association

Tau Consortium

BrightFocus Foundation

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

Reference231 articles.

1. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia

2. Classification of primary progressive aphasia and its variants

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