Further Research
Despite the progress made toward understanding the molecular pathology, pathophysiology, and management of the inherited hemoglobin disorders, many gaps persist:
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First, much better data are required about their frequency and distribution in many developing countries.
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Second, more information is required about the reasons, both genetic and environmental, for the remarkable clinical heterogeneity of these conditions.
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Third, much better criteria are required for the management of the intermediate forms of thalassemia and of sickle cell anemia.
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Fourth, much more work is required on the role of the environment, a topic that has been badly neglected compared with research on the genetics of these conditions.
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Finally, further studies are required on better methods for their symptomatic management or a definitive cure.
One important approach toward progress in controlling these diseases is further development of North-South partnerships (WHO 2002). Arrangements of this kind have been extremely successful for thalassemia but have not evolved for sickle cell anemia research. In both cases such partnerships should evolve and lead to local South-South networks allowing individual countries to share their expertise about these increasingly important conditions.
Finally, a great deal more work needs to be carried out, particularly in developing countries, to investigate the economic aspects of these diseases, in terms of both their overall health burden and their control and management.
