Our ongoing studies on FTD

We obtain clinical information and DNA as well as cells extracted from blood from the study participants. The clinical information helps us confirm the diagnosis and evaluate whether there are subtle differences in symptoms between different patient groups (male-female, bilingual-monolingual, etc). We use the DNA to identify genetic factors contributing to disease; first, we determine whether a variant in a known FTD gene is present; if not, then we will include these samples in our ‘discovery’ analyses with the goal to identify new genes contributing to FTD. These analyses for new genes can include studying families with multiple patients, or comparing large patients and control groups. We anticipate that as a whole the diverse patient cohort will have variants in both known but also new genes. The cells will be helpful in studying the effect of any new variants or genes potentially playing a role in FTD. It is the identification of these new variants/genes that are of importance to the diverse populations; as they might lead to new ideas on how we can treat FTD overall or in those populations specifically.

We are looking to enroll individuals who identify as Hispanic, African (American), Native American or Asian (American) and who have a diagnosis of either behavioral FTD or language variant FTD/primary progressive aphasia. There is no requirement for additional family members.

Additionally, we are looking to enroll individuals who identify as white, non-Hispanic and have a diagnosis of either FTD forms AND have other family members with any dementia diagnosis.

• No cost to participate and no travel is required.
  
• Participation includes interviews on family and medical history, and clinical assessments, which can be done remotely.
  
• Participation includes a one-time blood draw, which can be completed at the participant’s home.
  
• $25 gift card at completion of enrollment (blood draw + interviews)