Do you have problems with your thinking or memory? Or a parent or sibling with dementia? If so, we'd like you to join this registry about the brain and Alzheimer's disease. In return for providing us with a little bit of your health history and background, we will connect you with researchers doing studies you can join, without obligation. Many studies pay a stipend and some offer a possible treatment.
Do you have probable Dementia with Lewy Bodies (DLB), Mild Cognitive Impairment with "high likelihood" DLB, or Parkinson's Disease Dementia (PDD)? You may be able to participate in an observational study to track your disease progression and promote future research.
The purpose of this study is to evaluate both sporadic (not inherited), and familial (inherited), forms of frontotemporal lobar degeneration (FTLD). Patients include both those who have symptoms of FTLD and those who do not (yet have a family history involving FTLD). This is an observational study, meaning that there is no investigational treatment involved. We will be working with patients for up to a 5 year period to learn more about FTLD using a neurological exam, tests of memory, behavior, and judgement, MRI, and biospecimen collection (blood and/or CSF). This study involves genetic testing of the genes so far identified to be associated with FTLD. The overall goal is to help better understand FTLD, to better understand the genetics of FTLD, and to use the information we learn to guide improved patient care and potential drug development.