frontotemporal dementia

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Information
Disease name
frontotemporal dementia
Disease ID
DOID:9255
Description
"A dementia characterized by progressive neuronal loss predominantly involving the frontal and/or temporal lobes of the brain resulting in a gradual and progressive decline in behavior or language." [url:http\://en.wikipedia.org/wiki/Frontotemporal_dementia, url:http\://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/basics/definition/con-20023876, url:https\://www.ncbi.nlm.nih.gov/pubmed/21121521, url:https\://www.rarediseases.org/rare-disease-information/rare-diseases/byID/673/viewAbstract]
Disease area statistics
Chromosome band
Gene symbol Chromosome Start Stop The number of variant
DOCK3 3 50,674,927 51,384,198 16
DCC 18 52,340,197 53,535,899 8
ADAMTS2 5 179,110,853 179,345,461 6
METTL16 17 2,416,049 2,511,888 4
MAPT 17 45,894,554 46,028,334 4
ELAPOR1 1 109,114,115 109,206,781 4
PPARGC1A 4 23,792,021 23,890,047 4
BCAS3 17 60,679,458 61,392,831 4
IGF2BP2 3 185,643,975 185,825,012 4
SGSM1 22 24,806,319 24,925,137 4
Annotation
Genes Mutation Description Source Links
NCT ID Status Phase Summary Start date Completion date
NCT05742698 Active, not recruiting Phase 2 Nabilone for Agitation in Frontotemporal Dementia March 7, 2023 December 2025
NCT03912987 Active, not recruiting TRIAL READY (Clinical Trial Readiness) January 22, 2019 June 2025
NCT05012410 Active, not recruiting N/A WeCareAdvisor Study for Caregivers of People Living With Dementia December 13, 2021 October 2025
NCT05669365 Active, not recruiting N/A The Care Ecosystem Consortium Effectiveness Study January 17, 2023 December 31, 2025
NCT03987295 Active, not recruiting Phase 2 A Phase 2 Study to Evaluate Safety of Long-term AL001 Dosing in Frontotemporal Dementia (FTD) Patients (INFRONT-2) September 27, 2019 June 2, 2026
NCT05315661 Active, not recruiting Phase 1 The Safety and The Efficacy Evaluation of ET-STEM in Patients With Frontotemporal Dementia July 6, 2022 December 31, 2026
NCT03260920 Active, not recruiting Phase 2 Intranasal Oxytocin for Frontotemporal Dementia January 31, 2018 December 31, 2024
NCT04993755 Active, not recruiting Phase 2 A Phase 2a Study of TPN-101 in Patients With C9ORF72 ALS/FTD October 1, 2021 September 1, 2023
NCT05842473 Active, not recruiting N/A Long-term Effect of TMS in Primary Progressive Aphasia February 1, 2023 July 31, 2024
NCT05075187 Active, not recruiting Epidemiological Study in FRONtoTemporal Dementia September 1, 2021 September 30, 2024
NCT04220021 Active, not recruiting Phase 2 Safety and Therapeutic Potential of the FDA-approved Drug Metformin for C9orf72 ALS/FTD January 10, 2020 August 26, 2024
NCT04374136 Active, not recruiting Phase 3 A Phase 3 Study to Evaluate Efficacy and Safety of AL001 in Frontotemporal Dementia (INFRONT-3) July 23, 2020 October 11, 2027
NCT04516499 Active, not recruiting Neurofilament Surveillance Project (NSP) September 2, 2020 December 2026
NCT06209515 Active, not recruiting Sociodemographic Factors and Criminal Behaviour Preceding Neurodegenerative Disease - Retrospective Register Study January 1, 2022 December 31, 2027
NCT04937452 Active, not recruiting Phase 2 Dopaminergic Therapy for Frontotemporal Dementia Patients June 3, 2021 April 1, 2024
NCT05262023 Active, not recruiting Phase 1/Phase 2 A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of DNL593 in Healthy Participants and Participants With Frontotemporal Dementia (FTD-GRN) February 1, 2022 November 2025
NCT05916664 Completed N/A Efficacy Study of Kinto Care Coaching for Dementia Family Caregivers May 18, 2023 April 22, 2024
NCT02819700 Completed Evaluation and Characterization of Behavioural Disorders and Dementias by the Behavioural Dysexecutive Syndrome Inventory (BDSI) January 29, 2013 January 28, 2018
NCT02860338 Completed COMPARATIVE EFFECTIVENESS OF MCI and DEMENTIA TREATMENTS IN A COMMUNITY-BASED DEMENTIA PRACTICE January 2009 December 2015
NCT02999282 Completed N/A Rehabilitative Trial for the Rescue of Neurophysiological Parameters in Progranulin Deficient Subjects October 31, 2016 June 30, 2019
NCT03040713 Completed Phase 1 Flortaucipir PET Imaging in Subjects With FTD April 11, 2017 October 24, 2018
NCT03076671 Completed N/A More Than a Movement Disorder: Applying Palliative Care to Parkinson's Disease March 1, 2017 December 31, 2020
NCT03088956 Completed Cognitive, Behavioral, and Functional Change in Behavioral Variant Frontotemporal Dementia (bvFTD) January 19, 2018 September 23, 2019
NCT05525377 Completed N/A Better Living With Non-memory-led Dementia June 21, 2022 February 9, 2023
NCT03510572 Completed Early Phase 1 Evaluation of [18F]PI-2620 as a Potential Positron Emission Computed Tomography Radioligand for Imaging Tau Protein in the Brain June 4, 2018 July 31, 2019
NCT03625128 Completed Early Phase 1 18F-PM-PBB3 PET Study in Tauopathy Including Alzheimer's Disease, Other Dementias and Normal Controls January 2, 2018 December 3, 2018
NCT03636204 Completed Phase 1 A First in Human Study in Healthy Volunteers and in Participants With Frontotemporal Dementia With Granulin (GRN) Mutation September 14, 2018 December 31, 2019
NCT03682185 Completed Phase 3 The Healthy Patterns Sleep Study May 1, 2016 May 31, 2021
NCT03699644 Completed Multimodal Ocular Imaging in Neurodegeneration January 4, 2019 April 3, 2019
NCT03828383 Completed N/A In-Home Technology for Dementia Caregivers February 26, 2019 November 27, 2020
NCT03967535 Completed Connectomics in Psychiatric Classification December 1, 2018 September 5, 2019
NCT04104373 Completed The Ontario Neurodegenerative Disease Research Initiative July 7, 2014 April 30, 2018
NCT05508646 Completed N/A Group-Based Telehealth Music Therapy Intervention for Patients With Dementia: A Pilot Study January 1, 2023 January 29, 2024
NCT04157244 Completed N/A The Music, Sleep and Dementia Study March 12, 2019 January 12, 2021
NCT04165213 Completed N/A Care of Persons With Dementia in Their Environments (COPE) in Programs of All-Inclusive Care of the Elderly (PACE) June 28, 2021 May 31, 2024
NCT04413851 Completed Feasibility of Passive Data Collection in Dementia Subjects With Agitation June 1, 2020 December 6, 2021
NCT05444244 Completed N/A A Relational Research Recruitment and Engagement Intervention for Cognitive Aging Research August 1, 2022 May 31, 2023
NCT04489017 Completed Phase 2 Palmitoylethanolamide Combined With Luteoline in Frontotemporal Dementia Patients. A Randomized Controlled Trial June 1, 2019 June 30, 2023
NCT03923517 Completed N/A RHAPSODY-plus: Online Counseling for Family Caregivers of Patients With Young Onset Dementia January 1, 2018 May 30, 2019
NCT00376051 Completed Phase 4 Serotonergic Function and Behavioural and Psychological Symptoms of Frontotemporal Dementia September 2006 September 2009
NCT00416169 Completed Phase 2 A Pilot Study to Explore the Safety and Tolerability of Galantamine HBr in the Treatment of Pick Complex/Frontotemporal Dementia May 2003 July 2004
NCT00594737 Completed Phase 3 Open Label Pilot Study of the Effects of Memantine on FDG-PET in Frontotemporal Dementia October 2007 June 2012
NCT00938665 Completed Evaluation of a Handheld Event Related Potential (ERP)/Quantitative Electroencephalography (qEEG) System (COGNISION™) as a Useful Cognitive Biomarker for Alzheimer's Disease. December 2010 February 2014
NCT01002300 Completed N/A Oxytocin and Social Cognition in Frontotemporal Dementia September 2009 November 2010
NCT06354933 Completed Neurological Soft Signs in Neurodegenerative Dementias April 1, 2022 February 1, 2024
NCT01386333 Completed Phase 1 Safety Study of Intranasal Oxytocin in Frontotemporal Dementia June 2011
NCT01890343 Completed Phase 2 Imaging Characteristics of Florbetapir 18F in Patients With Frontotemporal Dementia, Alzheimer's Disease and Normal Controls. September 2009 April 2013
NCT01937013 Completed Phase 2 Impact of Emotional Mimicry and Oxytocin on Frontotemporal Dementia September 12, 2013 December 21, 2017
NCT02050464 Completed Computational Tools for Early Diagnosis of Memory Disorders December 2013 April 2017
NCT02055092 Completed Young Onset Dementia - the Difficult Diagnosis and the Stressful Life for the Whole Family February 2014 July 2020
NCT02236832 Completed N/A Study of the Neural Basis of Analogical Reasoning February 2015 February 2021
NCT02439853 Completed N/A Communication Bridge Speech Therapy Research Study March 2013 January 2020
NCT02496312 Completed N/A Quantitative Evaluation of Apathy Close to Real Life Situation by Means of a Multimodal Sensor System Integrated. July 10, 2015 October 2, 2015
NCT02506036 Completed N/A Efficacy of Web-Based Social-Cognitive Interventions in Right Hemisphere Stroke and Frontotemporal Dementia August 2015 May 2017
NCT05338710 Completed N/A Support Via Technology: Living and Learning With Advancing FTD January 14, 2021 March 4, 2022
NCT05019014 Completed Olfactory Deficits in Neurologic Disease August 10, 2011 July 3, 2020
NCT04939818 Completed Clinical Feasibility of Speech Phenotyping for Remote Assessment of Neurodegenerative and Psychiatric Disorders June 14, 2021 September 15, 2022
NCT04977245 Completed N/A Mindfulness-Based Stress Reduction in Dementia Caregivers August 12, 2021 April 4, 2022
NCT02327845 Enrolling by invitation Phenotype, Genotype & Biomarkers in ALS and Related Disorders April 2015 July 2025
NCT04961450 Enrolling by invitation Explore Biomarkers of Motor Neuron Disease/Frontal Dementia Spectrum Disease in China June 24, 2021 December 31, 2030
NCT06246019 Enrolling by invitation The Clinical Impact of the Novel Alzheimer's Blood-based Biomarkers February 7, 2024 December 31, 2025
NCT01459302 Enrolling by invitation Genetic Study of Familial and Sporadic ALS/Motor Neuron Disease, Miyoshi Myopathy and Other Neuromuscular Disorders January 2009 October 2024
NCT00950430 Enrolling by invitation Phase 4 Imaging of Brain Amyloid Plaques in the Aging Population April 2008 June 2024
NCT04060082 Enrolling by invitation Voices Of Individuals: Challenges and Experiences Of bvFTD June 26, 2019 December 2024
NCT05483322 No longer available An Open-Label, Expanded Access Protocol of LAM-002A in C9ORF72-Associated Frontotemporal Dementia (FTD)
NCT06377033 Not yet recruiting N/A Using the EHR to Advance Genomic Medicine Across a Diverse Health System May 1, 2024 June 30, 2027
NCT05956834 Recruiting A Multi-Modal Remote Monitoring Platform for Frontotemporal Lobar Degeneration (FTLD) Syndromes July 28, 2023 December 30, 2026
NCT01353430 Recruiting Characterization of Inclusion Body Myopathy Associated With Paget's Disease of Bone and Frontotemporal Dementia (IBMPFD) November 15, 2007 December 2026
NCT04875416 Recruiting Phenotype, Genotype and Biomarkers 2 January 8, 2021 August 2025
NCT06221202 Recruiting N/A Stories in the Moment: Dance Program for People Living With Dementia February 10, 2023 October 31, 2024
NCT04844060 Recruiting Cerebro Spinal Fluid Collection (CSF) February 2010 December 2030
NCT05288842 Recruiting Tanycytes in Alzheimer's Disease and Frontotemporal Dementia September 6, 2022 October 2026
NCT04747431 Recruiting Phase 1/Phase 2 A Study of PBFT02 in Patients With Frontotemporal Dementia and Progranulin Mutations (FTD-GRN) September 14, 2021 August 2027
NCT05326750 Recruiting N/A Non-invasive Neurostimulation as a Tool for Diagnostics and Management for Neurodegenerative Diseases November 21, 2022 July 2032
NCT04639622 Recruiting N/A GENetic Fronto Temporal Dementia Initiative in Lille April 23, 2019 April 23, 2026
NCT05374278 Recruiting Phase 1/Phase 2 First-in-Human Evaluation of an Astrocytic Glutamate Transporter (EAAT2) PET Tracer in Dementia November 2, 2021 July 1, 2025
NCT04425148 Recruiting N/A Gamma-Induction in FrontoTemporal Dementia Trial December 30, 2020 December 2025
NCT04408625 Recruiting Phase 1/Phase 2 Phase 1/2 Clinical Trial of LY3884963 in Patients With Frontotemporal Dementia With Progranulin Mutations (FTD-GRN) November 9, 2020 August 31, 2029
NCT06203106 Recruiting NYSCF Scientific Discovery Biobank November 10, 2022 November 10, 2045
NCT04114994 Recruiting Longitudinal Cognitive Assessment by BoCA October 1, 2019 October 1, 2029
NCT06093126 Recruiting Phase 4 Lemborexant for Insomnia in a Patient With Dementia: An N-of-1 Trial December 11, 2023 December 11, 2028
NCT05642351 Recruiting Autobiographical Specificity February 3, 2023 February 28, 2025
NCT03233646 Recruiting Retinal Imaging in Neurodegenerative Disease July 20, 2017 December 31, 2025
NCT05699330 Recruiting N/A Subgenual Cingulate Deep Brain STIMulation for Apathetic Behavioral Variant FRONtotemporal Dementia January 12, 2023 January 12, 2026
NCT03225144 Recruiting Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia October 11, 2017 October 30, 2025
NCT05779813 Recruiting Genetic Frontotemporal Dementia Initiative for Neurodevelopment March 2023 March 2035
NCT05779839 Recruiting N/A A Study of Caregiver Connections Via Technology in Dementia February 22, 2023 December 2024
NCT06064890 Recruiting Phase 1/Phase 2 A Study to Evaluate the Safety and Effect of AVB-101, a Gene Therapy Product, in Subjects With a Genetic Sub-type of Frontotemporal Dementia (FTD-GRN) August 30, 2023 October 31, 2030
NCT02945774 Recruiting N/A Molecular Neuroimaging of Neuroinflammation in Neurodegenerative Dementias August 2016 August 2025
NCT02795052 Recruiting N/A Neurologic Stem Cell Treatment Study June 2016 July 31, 2026
NCT00159198 Terminated Amyotrophic Lateral Sclerosis and Frontotemporal Dementia September 2002 June 2007
NCT05004558 Unknown status N/A Effects of Remote-based Resistance Training on Cardiometabolic Risk Factors, Cognitive Function, and Quality of Life in Adults Living With Alzheimer's Disease and/or Related Dementias September 1, 2021 June 2022
NCT03272230 Unknown status N/A Assessment of Apathy in a Real-life Situation, With a Video and Sensors-based System September 6, 2017 February 28, 2022
NCT05260151 Unknown status Tau Protein and SV2a Imaging in Patients With Tau Protein-related Diseases November 18, 2020 December 31, 2022
NCT04918251 Unknown status EEG and TMS-based Biomarkers of ALS, MS and FTD September 2012 April 2023
NCT01147679 Unknown status Study of Social Behavior and Emotion in Frontotemporal Dementia, Alzheimer's Disease and Controls January 2010 July 2014
NCT05497817 Withdrawn N/A A Study to Evaluate Caregiver Connections Via Technology for Patients With Alzheimer's and Other Types of Dementia September 2022 December 2024
NCT01615666 Withdrawn A Composite MR Neuroimaging Marker for Alzheimer's Disease March 2009 January 2016
NCT05830214 Withdrawn Digital Smartwatch Measurements as Potential Biomarkers for Remote Disease Tracking in ALS January 2024 February 6, 2024
Disase is a (Disease Ontology)
DOID:1307
Cross Reference ID (Disease Ontology)
GARD:8436
Cross Reference ID (Disease Ontology)
MESH:C563003
Cross Reference ID (Disease Ontology)
MIM:600274
Cross Reference ID (Disease Ontology)
ORDO:282
Cross Reference ID (Disease Ontology)
SNOMEDCT_US_2023_03_01:42369001
Cross Reference ID (Disease Ontology)
UMLS_CUI:C0520716
Exact Synonym (Disease Ontology)
frontotemporal lobar degeneration
Exact Synonym (Disease Ontology)
multiple system tauopathy with presenile dementia
Exact Synonym (Disease Ontology)
pallidopontonigral degeneration
Exact Synonym (Disease Ontology)
Wilhemsen-Lynch disease
HPO Human Phenotype ID (Human Phenotype Ontology)
HP:0002145
OrphaNumber from OrphaNet (Orphanet)
282
MedGen concept unique identifier (MedGen Concept name)
C0338451
MedGen unique identifier (MedGen Concept name)
83266
MeSH unique ID (MeSH (Medical Subject Headings))
D057180