ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
Frontotemporal Lobar Degeneration (FTLD)Progressive Supranuclear Palsy (PSP)12 moreARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) represents the formalized integration of ARTFL (U54 NS092089; funded through 2019) and LEFFTDS (U01 AG045390; funded through 2019) as a single North American research consortium to study FTLD for 2019 and beyond.
Phenotype, Genotype and Biomarkers 2
Amyotrophic Lateral SclerosisHereditary Spastic Paraplegia3 moreThe purpose of this study is to learn more about amyotrophic lateral sclerosis (ALS) and other related neurodegenerative diseases, including frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy (PMA) and multisystem proteinopathy (MSP). More precisely, the investigator wants to identify the links that exist between the disease phenotype (phenotype refers to observable signs and symptoms) and the disease genotype (genotype refers to your genetic information). The investigator also wants to identify biomarkers of ALS and related diseases.
Characterization of Inclusion Body Myopathy Associated With Paget's Disease of Bone and Frontotemporal...
Inclusion Body Myopathy With Early-onset Paget Disease and Frontotemporal DementiaPaget Disease of Bone2 moreThe investigators are researching families with inherited inclusion body myopathy (IBM) and/or Paget disease of bone (PDB) and/or dementia (FTD) which is also called IBMPFD. IBMPFD is caused by mutations in the VCP gene. Our main goal is to understand how changes in the VCP gene cause the muscle, bone and cognitive problems associated with the disease. The investigators are collecting biological specimen such as blood and urine samples, family and medical histories, questionnaire data of patients with a personal or family history of VCP associated disease. Participants do not need to have all symptoms listed above in order to qualify. A select group of participants may be invited to travel to University of California, Irvine for a two day program of local procedures such as an MRI and bone scan. Samples are coded to maintain confidentiality. Travel is not necessary except for families invited for additional testing.
Clinical Procedures to Support Research in ALS
Amyotrophic Lateral SclerosisALS-Frontotemporal Dementia2 moreThe purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
UPenn Observational Research Repository on Neurodegenerative Disease
Frontotemporal Degeneration(FTD)Primary Progressive Aphasia(PPA)7 moreThe aim of this study is to create a repository of both cross-sectional and longitudinal data, including cognitive, linguistic, imaging and biofluid biological specimens, for neurodegenerative disease research and treatment.
Genetic Frontotemporal Dementia Initiative for Neurodevelopment
Frontotemporal DementiaFamily MembersThis is an international multi-centre cohort study of first and second degree family members of individuals who carry Frontotemporal Dementia (FTD) mutations in MAPT, GRN or C9ORF72 repeat expansions for youths between the ages 9-17.
Epidemiological Study in FRONtoTemporal Dementia
Frontotemporal DementiaAn international, multicenter, epidemiological observational study aims to investigate the prevalence of genetic etiologies in patients diagnosed with FTD or clinically suspected for FTD.
Language in Primary Progressive Aphasia
Primary Progressive AphasiaThe purpose of this study is to further define the neurological and linguistic deterioration in primary progressive aphasia.
Autobiographical Specificity
MemoryAlzheimer Disease1 moreAutobiographical memory is diminished in patients with Alzheimer's Disease and those with behavioral variant of frontotemporal dementia, and research has focused on the hampered ability of patients in retrieving specific memories. However, this study proposes a detailed methodology to provide a qualitative analysis of autobiographical specificity.
Identification of Graphic Markers of Neurocognitive Disorders (MG)
Alzheimer DiseasePrimary Progressive Aphasia1 moreThe diagnosis of neurocognitive disorders such as early Alzheimer's disease (AD) or primary progressive aphasia (PPA) is particularly difficult and constantly evolving, often leading to diagnostic erraticity. However, several studies have shown that graphic parameters are affected in people with moderate to severe Alzheimer's disease. The use of new technologies in the study and analysis of the abilities of people with neurodegenerative diseases is increasingly recommended. The use of a digital tablet with a stylus makes it possible to objectivize the kinematic parameters of writing (pressure, inclination, speed, jerk, time of writing task) and thus would allow a low-cost diffusion of this technology in particular by including it in already existing screening batteries. The overall objective of the project is to characterize and compare the graphical markers of a writing task, either language-based (writing words, non-words, sentences) or non-language-based (drawing shapes), in patients with PPA, early-stage Alzheimer's disease (i.e., at the stage of minor neurocognitive disorders and major neurocognitive disorders at the beginning of the disease), and in people with no cognitive disorders.