THAOS: TTR Amyloidosis Patient Registry
www.thaos.net
THAOS is a global, ongoing observational patient survey which tracks health information on patients who have transthyretin (TTR) amyloidosis. Patients with this condition may have a hereditary form due to genetic mutations or an acquired form due to the aging process. The survey collects information on the natural history of this disease and compiles this information for medical experts to review. The information collected from the survey will help doctors to better understand and improve the treatment and management of patients with this disease.
What is the purpose of the survey?
Because transthyretin amyloidosis is a rare disease, it is important to collect as much available information on patients to better understand both the disease and how to treat it. The major reasons for conducting this survey are:
- To describe the population of patients who have both the hereditary and acquired forms of this disease
- To better understand the natural history of different forms of the disease
- To bring together an international community of medical experts who specialize in treating patients with TTR-Amyloidosis
- To better understand, manage, and treat patients with TTR-Amyloidosis through the publication of the survey data.
Who can participate?
All patients with confirmed TTR Amyloisosis (hereditary or acquired forms) are eligible to participate in the survey. Patients with this disease who are participating in a clinical trial that is testing an experimental therapy may participate in THAOS after completing the clinical trial.
More Information
To find out more about THAOS please send an email THAOS@foldrx.com or call 617-252-5500 and ask to speak with a THAOS project manager. you may also go to the THAOS website.