FTD Disorders Registry, LLC
The FTD Disorders Registry LLC was co-founded March 2015, as an independent, non-profit entity by two non-profit organizations, namely the Association for Frontotemporal Degeneration and The Bluefield Project to Cure Frontotemporal Dementia. The FTD Disorders Registry (FTDDR) launched to public enrollment Spring 2017 giving birth to a shared vision to create a patient registry to serve the frontotemporal disorders community.
The FTDDR is a dynamic online database that is designed to function as the central resource for the lay community (patients, families, caregivers) who generously agree to share their data with us, as well as the research and development community (academic, government, industry, non-profit sector) with the hope that together, we will find a cure. Thus, the Registry supports the interests of a diversity of stakeholders with the overriding objectives to support research, clinical trial recruitment and drug development. Longitudinal, long-term data collection may also support the development of standards of care and potentially improve patient outcomes even in the absence of therapeutics.