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PATIENTS & STAKEHOLDERS

The treatment options that we are developing within the TRACER research might have a big impact on the lives of patients with sickle cell anemia and Diamond-Blackfan anemia. To ensure that this research is done in a responsible way and with the goal in mind to make treatments as acceptable, accesible and affordable as possible, we involve different stakeholders in the research. It is important to know what patients and patient organizations want and need for these treatments to be acceptable. It is necessary to know if the treatments can be done in line with patient and health care workers' values at center stage and if hospitals can offer the treatments. Lastly, the treatments should be affordable for patients through health care insurance. To make this happen, we are and have been in contact with representatives of the stakeholders continuously throughout the different stages of the research.


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