FTD Disorders Registry (FTDDR) disease impact survey: Understanding the lived experience of persons affected by frontotemporal degeneration (FTD), including those diagnosed, their families and caregivers
Abstract:Background
FTD is a group of rare brain diseases that cause myriad progressive changes to behavior, personality, language, and movement with onset typically before age 60. There are currently no treatments or cure. The FTDDR is a regulatory‐compliant, web‐based portal that functions as both a Contact Registry and Research Registry for persons affected by FTD to amplify the patient/family voice and facilitate research. The Disease Impact Survey was designed to characterize person‐centric perceptions of FTD dise… Show more
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