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‟FTLD is a devastating disease and a unique challenge for researchers. With the help of our partners in advocacy and industry, and the tremendous contributions from our patients and their families, we will develop effective treatments for FTLD.〞

— Dr. Howard Rosen, ALLFTD Principal Investigator

 

Our Mission

The overall goal of ALLFTD is to prepare for treatment trials in FTLD. To do this, we:

  1. Build a cohort of FTLD patients at expert centers who can be available for treatment trials.

  2. Collect data on cognitive and behavioral assessments, imaging, blood and cerebral spinal fluid. With this data we seek to:

    • Identifying the best clinical measurements and biomarkers for following patients with FTLD in treatment trials

    • Identifying clinical measurements and biomarkers that indicate when a person with a high risk of developing FTLD due to a mutation will begin to have symptoms.

  3. Share data, images and samples from participants with other researchers to further our knowledge of FTLD.

ALLFTD is a comprehensive study targeting most varieties of frontotemporal lobar degeneration (FTLD). The project is co-directed by Dr. Brad Boeve at the Mayo Clinic in Rochester, Minnesota, and Drs. Adam Boxer and Howard Rosen, at University of California, San Francisco (UCSF). Mayo Clinic serves as the administrative and data management center.