A Pilot Study to Measure the Effectiveness of a Neonatal Sickle Cell Screening and Comprehensive Care Program in Kenya. Rebecca Evans, LCGC Indiana Hemophilia and Thrombosis Center Indianapolis, IN. Presenter Disclosures. Rebecca Evans, LCGC
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A Pilot Study to Measure the Effectiveness of a Neonatal Sickle Cell Screening and Comprehensive Care Program in Kenya
Rebecca Evans, LCGC
Indiana Hemophilia and Thrombosis Center
Rebecca Evans, LCGC
The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:
Is sickle cell trait the same
Image: Genetic Science Learning Center, University of Utah, http://learn.genetics.utah.edu
Leads to significant reduction in mortality1,2
Is there a cure? Yes, a bone marrow transplant; however, only about 150 have been successful worldwide.3
Quinn CT, et al. Survival of children with sickle cell disease. Blood 2004;103(11):4023-7.
Telfer P, et al. Clinical outcomes in children with sickle cell disease living in England: a neonatal cohort in East London. Haematologia2007; 92(7):905-12.
The management of sickle cell disease. National Institutes of Health. National Heart, Lung and Blood Institute. NIH Publication No. 02-2117. 4th edition. 2002.
In 2004 and 2005, UNESCO, the African Union, and the World Health Organization officially listed sickle cell disease as a disease of urgent priority in sub-Saharan Africa.
However, since then, very little has been done due to limited resources, expertise and advocacy.
UNESCO. General Conference, 33rd Session, Commission II. Paris, France. 2005
Assembly of the African Union, 5th Ordinary Session. Sirte, Libya. 2005.
World Health Organization, 117 Session EB117/34. 2006.
There are limited facilities in Kenya that provide access to testing and NO broad-based screening programs exist.
1.Hassell KL. Population estimates of sickle cell disease in the U.S. American journal of preventive medicine 2010;38:S512-21. 2. Rees DC, Williams TN, Gladwin MT. Sickle-cell disease. Lancet 2010;376:2018-31. 3. http://www.nlm.nih.gov/medlineplus/ency/article/000527.htm. 4. Quin CT, Rogers ZR, Buchanan GR. Survival of children with sickle cell disease. Blood 2004;103(11):4023-7. 5. http://www.who.int/genomics/public/Maphaemoglobin.pdf.
6. WHO. Sickle-cell anemia. World Health Organization Assembly Journal 2006;6:A59/59.
~40 births/day at MTRH
(~73 with SCD/year)
Isoelectric focusing gel used for detection
Mothers of these infants will be educated about the screening program and must provide informed consent
Free testing will be provided before discharge
Patients/families will be contacted by phone within 1 week if positive for a hemoglobinopathy
Confirmatory testing will be performed at the patients 3 month follow-up visit
Treatment costs for those diagnosed with sickle cell disease
Total cost, including diagnosis and treatment, is $3574/year
We propose that this pilot program will demonstrate feasibility and serve as a model likely replicable in other Africa settings.