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Other Sickle Cell Priorities

A. Expand Global Initiatives

Over 400,000 children are born each year with SCD, with most in sub-Saharan Africa and India. For the majority of these children, their life expectancy is significantly shortened due to infection and lack of proper diagnosis. In the United States, newborn screening, childhood vaccinations, antibiotic prophylaxis, family education, screening for stroke risk, and availability of blood transfusions, has dramatically increased the overall survival of children with SCD to the extent that we expect every child to reach adulthood. Hydroxyurea also has a great potential for low-resource settings but has not been adequately tested for safety and efficacy as such.

Unaddressed Questions:

  1. How can the success of the President's Emergency Plan for AIDS Relief (PEPFAR), which dramatically reduced the burden of HIV infection in sub-Saharan Africa and India, be extended to decrease the burden of SCD in those countries with the establishment of diagnosis, treatment and research centers?
  2. How can the number of clinical and translational research programs in sub-Saharan Africa and India be increased?

Specific Priority:

  1. PEPFAR-like funding activities for training, treatment and research in SCD in sub-Saharan Africa and India.

B. Support a Sustainable SCD Workforce

There is a paucity of fellows and junior faculty who pursue basic and clinical/translational research in SCD, due in part to limited funding and career opportunities. Primary care providers often deliver the majority of healthcare to individuals with SCD, but unfortunately often do not have adequate background in SCD management. With a renewed emphasis on primary care, implementation of evidence-based guidelines should include strategies to train and educate primary care providers in the management of SCD. This expanded workforce will be also crucial in accelerating critical patient-oriented clinical research.

Unaddressed Questions:

  1. How to increase the number of slots for fellows and junior faculty through increasing the number of competitive investigator-initiated clinical trials?
  2. How to identify primary care providers willing to receive training in management of SCD and expand their practices to be a regional source of primary care as well as enrollment hubs for SCD clinical trials or observational studies?

Specific Priorities:

  1. Additional training grants for fellows focused on SCD research and funding for junior faculty to focus on SCD-related research (unrelated to large program project grants).
  2. Providing resources to community-based practices to educate primary care providers in SCD management, partnership for clinical trials and observational research.