THAOS for Patients and Individuals at Risk
Welcome to the Patient and Individuals at Risk Portal which is intended to help you learn more about TTR amyloidosis, as well as to provide details of support groups for anyone concerned about TTR amyloidosis.
What is THAOS?
THAOS is an international disease registry overseen by a Scientific Board comprised of scientific and clinical experts in the field of amyloid disease. TTR amyloidosis is a rare condition. THAOS aims to collect data on the disease from people diagnosed with TTR amyloidosis as well as carriers of TTR mutation(s), to improve the knowledge and understanding of the disease and its management.
Financial support for THAOS has been provided by Pfizer.
Why should you get involved in THAOS?
The purpose of THAOS is to help treating physicians better understand TTR amyloidosis and its causes, to enable early diagnosis and appropriate treatment, leading to a better quality of life for patients and their families. By becoming involved in THAOS, you will be adding to the knowledge of physicians worldwide who treat TTR amyloidosis.
How will enrollment in THAOS affect you?
Being enrolled in THAOS will not affect the care you receive, and you will continue to be treated for TTR amyloidosis according to standard clinical practice in your country. Your participation in THAOS will, however, allow your data (which will be anonymous) to be collected and analyzed and will contribute to the information that is known about this rare condition.
By publishing the findings from THAOS, we hope to raise awareness of TTR amyloidosis and so ensure more patients receive an earlier diagnosis and have access to appropriate care at an earlier stage of their disease.
How to get involved in THAOS
If you have been diagnosed with TTR amyloidosis, or suspect you or a family member might have the disease and would like to be enrolled in THAOS, please talk to your treating physician who will be able to discuss this with you.