Understanding the Thalassaemia Community Health Literacy and Its Impact on Care
A Global Patient Survey by the Thalassemia Advocacy Advisory Council
This is part of a global survey to improve the understanding of health literacy within the thalassemia community and how this may impact disease management and care, a global survey is being conducted by the Thalassemia Advocacy Advisory Council (AAC).
The Thalassemia AAC is a multi-stakeholder group, sponsored and funded by Agios Pharmaceuticals, comprised of patients, physicians, caregivers, and patient advocates seeking to co-create solutions to unmet community needs. The Thalassaemia International Federation (TIF) is a member of this council.
Survey Objectives:
The survey aims to define the level of health literacy among thalassemia patients in terms of how much of their disease management they understand, alongside the long-term impacts of the disease. The survey will take approximately 15-minutes and will be online.
Expected Outcomes:
The goal of this survey will be to improve the access of people affected by thalassemia to up-to date and relevant information about the condition. Providing greater understanding and ability to manage their health.
How to Contribute:
If you would like to participate in this survey you must be:
• A physician-diagnosed thalassemia patient of any sub-type (excluding thalassemia trait).
• Age 18 or older.
• Not currently taking part in an Agios clinical trial.
All responses will remain anonymous and will be handled in strict accordance with the Vitreous World (the survey distributor) Privacy Notice and local regulations, including the General Data Protection Regulation (GDPR) guidelines if applicable.
If you would like to participate, please access the survey for your country using the following links:
