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.
Type: Observational
Start Date: Nov 2007
open study
