Clinical Trials Logo

Clinical Trial Summary

The 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 Trial Description

n/a


Study Design


Related Conditions & MeSH terms


NCT number NCT01353430
Study type Observational
Source University of California, Irvine
Contact Virginia Kimonis, MD
Phone 949 824 0571
Email vkimonis@uci.edu
Status Recruiting
Phase
Start date November 15, 2007
Completion date December 2026

See also
  Status Clinical Trial Phase
Recruiting NCT05288842 - Tanycytes in Alzheimer's Disease and Frontotemporal Dementia
Recruiting NCT03272230 - Assessment of Apathy in a Real-life Situation, With a Video and Sensors-based System N/A
Active, not recruiting NCT03987295 - A Phase 2 Study to Evaluate Safety of Long-term AL001 Dosing in Frontotemporal Dementia (FTD) Patients (INFRONT-2) Phase 2
Withdrawn NCT05497817 - A Study to Evaluate Caregiver Connections Via Technology for Patients With Alzheimer's and Other Types of Dementia N/A
Recruiting NCT04918251 - EEG and TMS-based Biomarkers of ALS, MS and FTD
Completed NCT01890343 - Imaging Characteristics of Florbetapir 18F in Patients With Frontotemporal Dementia, Alzheimer's Disease and Normal Controls. Phase 2
Completed NCT01002300 - Oxytocin and Social Cognition in Frontotemporal Dementia N/A
Completed NCT00376051 - Serotonergic Function and Behavioural and Psychological Symptoms of Frontotemporal Dementia Phase 4
Terminated NCT00159198 - Amyotrophic Lateral Sclerosis and Frontotemporal Dementia Phase 1
Active, not recruiting NCT04516499 - Neurofilament Surveillance Project (NSP)
Recruiting NCT04747431 - A Study of PBFT02 in Patients With Frontotemporal Dementia and Progranulin Mutations (FTD-GRN) Phase 1/Phase 2
Completed NCT03636204 - A First in Human Study in Healthy Volunteers and in Participants With Frontotemporal Dementia With Granulin (GRN) Mutation Phase 1
Completed NCT01937013 - Impact of Emotional Mimicry and Oxytocin on Frontotemporal Dementia Phase 2
Active, not recruiting NCT05075187 - Epidemiological Study in FRONtoTemporal Dementia
Not yet recruiting NCT05004558 - 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 N/A
Completed NCT02999282 - Rehabilitative Trial for the Rescue of Neurophysiological Parameters in Progranulin Deficient Subjects N/A
Completed NCT00594737 - Open Label Pilot Study of the Effects of Memantine on FDG-PET in Frontotemporal Dementia Phase 3
Recruiting NCT03225144 - Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia
Active, not recruiting NCT04993755 - A Phase 2a Study of TPN-101 in Patients With C9ORF72 ALS/FTD Phase 2
Recruiting NCT04114994 - Longitudinal Cognitive Assessment by BoCA