Clinical Trials Education and Awareness Raising Program for Patient Organizations: To reduce barriers for patients and families with hereditary blood disorders (HBD) in accessing clinical trials, especially in low and medium-resource countries, it is imperative to empower the patient organizations serving these families.
The GANSID is educating and raising awareness among patient organizations with the expected outcomes of improving the capacity of the patient organizations in demystifying clinical trials, helping families understand their rights around trials, and invariably improving participation.
Development of Clinical Trial Site Guidelines: Though they might have the population for clinical trials, many hospitals in low and medium-resource countries do not have the structure to qualify as clinical trial sites. The GANSID is developing clinical trial methodologies that will serve as a standard for sites interested in embarking on hereditary blood disorders’ clinical trials and support centers in utilizing them.