TIF STUDY | Desferioxamine Usage Survey
The Thalassaemia International Federation (TIF) is committed to supporting the thalassaemia community and advocating for access to essential treatments. Due to recent concerns about the availability of Desferioxamine (Desferal) in various countries and regions worldwide, we are conducting a crucial survey to collect data on its usage among patients.
Desferioxamine is crucial in managing iron overload for many patients with thalassaemia and related blood conditions. Recently, the Thalassaemia International Federation (TIF) has received growing reports of shortages in Desferioxamine, especially compared to oral chelation therapies’ availability. We must provide the pharmaceutical industry with an accurate assessment of current Desferioxamine usage to ensure the drug’s continued production and availability.
Who Should Participate?
We invite all physicians treating patients with thalassaemia, sickle cell disease (SCD), and rare anaemias to contribute to this survey. Your insights are invaluable in helping us advocate for the continued supply of Desferioxamine.
Survey Details:
What We Ask
- How many patients do you currently treat?
- How many of your patients are using Desferioxamine, either as monotherapy or in combination with other chelation therapies?
- Have you experienced any shortages of Desferioxamine in recent months/years? How has this affected patient care in your center?
How to Participate:
You can fill out the survey online: https://www.surveymonkey.com/r/6M8X33B
For Patients:
We also encourage patients with thalassaemia to share this survey by TIF with their treating physicians to ensure that their voices are heard and included in this important data collection.
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