SynthesisAlzheimer's & dementia : the journal of the Alzheimer's Association2025
An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.
Abstract readSystematic ReviewConsensus Statement
In one paragraph
Synthesis in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 1 pooled it
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What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Long-Term Therapy With Transcranial Magnetic Stimulation in Primary Progressive Aphasia: A Randomized Clinical Trial.JAMA network open · 2025Trial
- Care Partner Perceptions of Conversation Difficulties, Strategy Use, and Psychosocial Impacts in Primary Progressive Aphasia: A Descriptive Study Using the PCI-DAT.Brain sciences · 2026Article
- "Not That I've Become Exceptional, But I'm Able to Make Myself Understood Better": Impact of Speech and Language Therapy on Everyday Communication in People with Primary Progressive Aphasia and Their Carers.Neurology and therapy · 2026Article
- Neurostimulation with Naming Therapy for Primary Progressive Aphasia: A Pilot Study Targeting Transcranial Direct Current (tDCS) Stimulation for the Individual.Brain sciences · 2026Article
- Speech and language outcome measures in clinical trials of Alzheimer's and Parkinson's diseases.Expert review of neurotherapeutics · 2026Review
- The Progressive Aphasia Communication Toolkit (PACT): A Strengths-Based Approach to Multidomain Evaluation for Intervention.medRxiv : the preprint server for health sciences · 2025Article
- Adaptation of Better Conversations with Primary Progressive Aphasia to Norwegian.Brain sciences · 2025Article
- Feasibility of Home-Based Transcranial Direct Current Stimulation with Telerehabilitation in Primary Progressive Aphasia-A Case Series.Brain sciences · 2025Article
- Dementia is our "biggest expanding caseload": Core learning for student speech and language therapists.PloS one · 2025Article
- Primary Progressive Aphasia Treatment: Current Treatment Options in Neurology Article Topic: Management of Primary Progressive Aphasia.Current treatment options in neurology · 2025Review
- Effectiveness of a teletherapy-based phonological short-term memory training in reducing phonological impairments in the logopenic variant of primary progressive aphasia: a multiple case study.Frontiers in human neuroscience · 2025Article
- The Progressive Aphasia Communication Toolkit (PACT): a strengths-based approach to multidomain evaluation for intervention.Alzheimer's & dementia (Amsterdam, Netherlands)Article
- 'It Is of Course About Being Human Together': Co-Development of a Primary Progressive Aphasia Awareness Campaign to Enhance Understanding of Speech and Language Therapy.International journal of language & communication disordersArticle
- Comprehensive intervention combining group and personalized language therapy in primary progressive aphasia: Quantitative and qualitative findings.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
66 authors.
Anna VolkmerDivision of Psychology and Language Sciences, University College London, London, UK.ORCID 0000-0002-4149-409X
Emily Viega AlvesGraduate Programme in Medical Sciences, Federal University of Rio Grande do Sul, Porto Alegre, Brazil.
Hagit Bar-ZeevSheba Medical Center, Tel Hashomer, Ramat Gan, Israel.
Elena BarbieriMesulam Center for Cognitive Neurology and Alzheimer's Disease, Northwestern University, Chicago, Illinois, USA.
Petronilla BattistaIstituti Clinici Scientifici Maugeri IRCCS, Laboratory of Neuropsychology, Pavia, Italy.
Ashleigh BealesCommunity Rehabilitation Unit, Tasmanian Health Service, Hobart, Tasmania, Australia.
Barbara Costa BeberDepartment of Speech, Language and Hearing Sciences, Graduate Program in Rehabilitation Sciences, Universidade Federal de Ciências da Saúde de Porto Alegre (UFCSPA), Porto, Brazil.
Emilie BrotherhoodDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Ines Ribeiro CadorioCenter for Health Technology and Services Research (CINTESIS@RISE), Universidade Fernando Pessoa, Fernando Pessoa School of Health Sciences, Porto, Portugal.
Maria Teresa Carthery-GoulartHuman Communication, Learning, and Development Unit, Faculty of Education, The University of Hong Kong, Hong Kong, Hong Kong SAR.
Jade CartwrightSchool of Health Sciences, College of Health and Medicine, University of Tasmania, Hobart, Tasmania, Australia.
Sebastian CrutchDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Karen CrootSchool of Psychology, University of Sydney, Sydney, New South Wales, Australia.
Maria Isabel D Ávila FreitasDepartment of Speech, Language and Hearing Sciences, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil.
Jeanne GalléeDepartment of Medicine, University of Washington, Seattle, Washington, USA.
Stephanie M GrassoDepartments of Speech, Language and Hearing Sciences and Neurology, The University of Texas, Jesse H. Jones Communication Center, Austin, Texas, USA.
Katarina HaleyDepartment of Health Sciences, University of North Carolina School of Medicine, UNC-Chapel Hill, Chapel Hill, North Carolina, USA.
Heleen HendriksenAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, UMC location VUmc, Amsterdam, The Netherlands.
Shalom Henderson18 Medical Research Council Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, UK.
Lize JiskootDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Isabel Junqueira AlmeidaCognitive and Behavioural Neurology Unit, Neurology Clinic Division, Hospital das Clínicas, School of Medicine, University of São Paulo, São Paulo, Brazil.
Jackie KindellDivision of Psychology, Communication & Human Neuroscience, University of Manchester, Manchester, UK.
Rachel KingmaSpeech Pathology Department, Uniting War Memorial Hospital, School of Psychological Sciences, Macquarie University, Waverley, Sydney, New South Wales, Australia.
Lorinda Ly Kwan-ChenDepartment of Special Education and Counselling, The Education University of Hong Kong, Hong Kong, PR China.
Monica LavoieChaire de recherche sur les aphasies primaires progressives - Fondation de la famille Lemaire, CHU de Québec - Université Laval, Québec, Canada.
Adi Lifshitz-Ben-BasatDepartment of Communication Disorders, Faculty of Health Sciences, Ariel University, Ari'el, Israel.
Regina JokelRotman Research Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
Aurore Mahut-DubosLille Neuroscience & Cognition, University of Lille, Lille University Hospital, Lille, France.
Jordi A Matias-GuiuDepartment of Neurology, Hospital Clínico San Carlos, San Carlos Health Research Institute (IdISSC), Madrid, Spain.
Michèle Masson-TrottierDepartment of Neurology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
Marcus MeinzerDepartment of Neurology, University Medicine Greifswald, Greifswald, Germany.
Ellen McGowanPennine Care National Health Service Foundation Trust, Manchester, UK.
Carolina Mendez-OrellanaHealth Sciences Department, Speech, Language and Hearing School, Faculty of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile.
Aaron M MeyerCenter for Aphasia Research and Rehabilitation, Georgetown University Medical Centre, Washington, District of Columbia, USA.
Carly MillanskiDepartments of Speech, Language and Hearing Sciences and Neurology, The University of Texas, Jesse H. Jones Communication Center, Austin, Texas, USA.
Núria MontagutFundació de Recerca Clínic Barcelona-IDIBAPS, Barcelona, Spain.
Aimee MooneyOregon Alzheimer's Disease Research Center - Department of Neurology, Oregon Health & Science University, Portland, Oregon, USA.
Darby J MorhardtMesulam Center for Cognitive Neurology and Alzheimer's Disease, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Lyndsey NickelsSchool of Psychological Sciences, Macquarie University, Sydney, New South Wales, Australia.
Monica NorvikDepartment of Acquired Brain Injury, Department of Education, Faculty of Humanities, Social Sciences, and Education, UiT the Arctic University of Norway, Tromsø, Norway.
Iris Edda NowensteinSpeech-Language Pathology Unit, National University Hospital and Institute of Linguistics, University of Iceland, Reykjavik, Iceland.
Avanthi PaplikarDepartment of Speech and Language Studies, SpeakUp Centre for Speech Therapy & Neuro Rehabilitation, Dr. S. R. Chandrasekhar Institute of Speech and Hearing, Bangalore, India.
Margaret PozzebonAge Right Speech Pathology, Melbourne, Australia.
Antoine RenardUnité PsyNcog, ULG, HEC-ULg Ecole de Gestion de l'Université de Liège, Unité PsyNcog, ULG, Liège, Belgium.
Leanne RuggeroSchool of Psychological Sciences, Macquarie University, Sydney, New South Wales, Australia.
Emily RogalskiDepartment of Neurology, Healthy Aging & Alzheimer's Research Care (HAARC) Center, University of Chicago, Chicago, Illinois, USA.
Anna U RysopDepartment of Neurology, University Medicine Greifswald, Greifswald, Germany.
Fredrik Sand AronssonDivision of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Section of Speech and Language Pathology, Medical Unit Allied Health Professionals, Karolinska University Hospital, Karolinska, Sweden.
Aida Suárez-GonzálezDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Sharon SavageSchool of Psychological Sciences, University of Newcastle, Callaghan, New South Wales, Australia.
Mai Tran ThiDepartment of Speech and Language Therapy, Neuroscience & Cognition, Inserm UMRS1172, University of Lille, Lille University Hospital, Lille, France.
Kyriana TsapkiniDepartment of Neurology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
Cathleen Taylor-RubinSpeech Pathology Department, Uniting War Memorial Hospital, School of Psychological Sciences, Macquarie University, Waverley, Sydney, New South Wales, Australia.
Donna C TippettDepartments of Physical Medicine and Rehabilitation, Neurology, and Otolaryngology - Head and Neck Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Nina UngerDepartment of Neurology, University Medicine Greifswald, Greifswald, Germany.
Lizet van EwijkResearch Group Speech and Language Therapy, Participation through Communication, Research Centre Health and Sustainable Living, HU University of Applied Science Utrecht, Utrecht, The Netherlands.
Sandra WielaertRijndam Rehabilitation Centre, Rotterdam, The Netherlands.
Ingvild Elisabeth WinsnesDepartment of Linguistic and Scandinavian Studies, University of Oslo, Oslo, Norway.
Anne WhitworthSchool of Health Sciences, College of Health and Medicine, University of Tasmania, Hobart, Tasmania, Australia.
Ibrahim Can YasaDepartment of Speech and Language Therapy, Faculty of Health Sciences, Bahcesehir University, Beşiktaş, Istanbul, Turkey.
David CoplandQueensland Aphasia Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Maya L HenryDepartments of Speech, Language and Hearing Sciences and Neurology, The University of Texas, Jesse H. Jones Communication Center, Austin, Texas, USA.
Jason D WarrenDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Rosemary VarleyDivision of Psychology and Language Sciences, University College London, London, UK.
Sarah J WallaceQueensland Aphasia Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Chris J D HardyDementia Research Centre, Department of Neurodegenrative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Funding
Neuropathology CoreP30AG013854 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI ROGALSKI, EMILY J · 1996 to 2020
$28.9MResearch Education Core FP30AG072977 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI ROBERT J VASSAR · 2021 to 2026
$26.3MCommunication Bridge: Optimizing an evidence-based intervention for individuals with primary progressive aphasiaR01AG055425 · NIA · UNIVERSITY OF CHICAGO · PI EMILY J ROGALSKI, Angela Christine Roberts · 2017 to 2026
$14.8MASYMMETRIC NEURODEGENERATION AND LANGUAGE IN PRIMARY PROGRESSIVE APHASIAR01AG077444 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI MAREK-MARSEL M MESULAM, EMILY J ROGALSKI · 2022 to 2026
$10.4MPhase II clinical trial of transcranial direct current stimulation in the treatment of primary progressive aphasiaR01AG075111 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Roy H Hamilton, Kyrana Tsapkini · 2022 to 2026
$6.7MRehabilitation and Prophylaxis of Anomia in Primary Progressive AphasiaR01DC011317 · NIDCD · GEORGETOWN UNIVERSITY · PI FRIEDMAN, RHONDA B, MEYER, AARON M · 2011 to 2021
$6.4MProgram Development and Pilot CoreP30AG066614 · NIA · UNIVERSITY OF TEXAS AT AUSTIN · PI DEBRA J. UMBERSON · 2020 to 2026
$5.2MDeterminants of neurodegenerative decline in the aphasic variant of Alzheimer's diseaseR01AG056258 · NIA · UNIVERSITY OF CHICAGO · PI ROGALSKI, EMILY J · 2017 to 2022
$4.1MTargeting language-specific and executive-control networks with transcranial direct current stimulation in aphasic ADR01AG075404 · NIA · JOHNS HOPKINS UNIVERSITY · PI Kyrana Tsapkini · 2022 to 2026
$4.0MTranscranial direct current stimulation in typical and atypical Alzheimer's diseaseR01AG068881 · NIA · JOHNS HOPKINS UNIVERSITY · PI TSAPKINI, KYRANA · 2020 to 2024
$3.8MEstablishing Evidence-based Treatment for Speech and Language in Primary Progressive AphasiaR01DC016291 · NIDCD · UNIVERSITY OF TEXAS AT AUSTIN · PI HENRY, MAYA · 2017 to 2021
$3.3MBrain networks for reading in stroke alexia and typical agingR01DC020446 · NIDCD · GEORGETOWN UNIVERSITY · PI RHONDA B FRIEDMAN, Peter Ethan Turkeltaub · 2022 to 2026
$3.2MAlzheimer's Society, Alzheimer's Research UK, the Royal National Institute for Deaf People G105_WARRENEstelle and Carl Epstein Family Philanthropic FundsFellowship award from Alzheimer's Society, UK 627Gates Foundation OPP1144National Brain Appeal (Frontotemporal Dementia Research Studentship in Memory of David BlechnerNational Health and Medical Research Council (NHMRC) 1175821National Institute for Health and Care Research COV-LT2-0014National Institute for Health and Care Research NIHR203680National Institute for Health Research University College London Hospitals Biomedical Research CentreNIA NIH HHS P30 AG013854NIA NIH HHS P30 AG066614NIA NIH HHS R01 AG055425NIA NIH HHS R01AG055425NIA NIH HHS R01 AG056258NIA NIH HHS R01AG056258NIA NIH HHS R01 AG068881NIA NIH HHS R01 AG075111NIA NIH HHS R01 AG075404NIA NIH HHS R01 AG077444NIA NIH HHS R01 AG080470NIA NIH HHS R56 AG055425NIDCDNIDCD NIH HHS R01 DC011317NIDCD NIH HHS R01 DC016291NIDCD NIH HHS R01 DC020446NIH/NIA R01AG068881NIH/NIA R01AG075111NIH/NIA R01AG075404NIH/NIA R01AG080470NIH/NIDCD R01DC016291NIHR NIHR203680Research Council of Norway, Centres of Excellence funding scheme 223265Research Trainees Coordinating Centre NIHR302240UK Research and InnovationUniversity College London Grand Challenges
Abstract
introductionInterventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention.
methodsFollowing Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 - systematic review to identify measures; Stage 2 - consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 - e-Delphi consensus with 57 researchers.
resultsThe systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders. HIGHLIGHTS: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.
Indexed as
Aphasia, Primary ProgressiveCommunicationOutcome Assessment, Health CareDelphi TechniqueHumanscore outcome setdementiainterventionsoutcome measuresprimary progressive aphasiaspeech and language therapy
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