Prof Kwaku Ohene-Frempong, M.D., was born in Ghana and came to the United States in 1966 to attend Yale University. He received his Bachelor of Science degree in Biology in 1970. After graduating from the Yale School of Medicine in 1975, he trained in Pediatrics at the New York Hospital - Cornell Medical Center, and in Pediatric Hematology-Oncology (1977-80) at the Children’s Hospital of Philadelphia (CHoP). Following a 6-year service at Tulane University Medical Center to develop a Sickle Cell Disease Program in Louisiana, he returned to CHoP in 1986. Dr. Ohene-Frempong has organized and been involved in several research projects through the Comprehensive Sickle Cell Center at CHoP and is devoting an increasing amount of time to sickle cell disease program development in Africa.
In Ghana, he developed the first public health program for screening newborns for sickle cell disease in Africa. With assistance from the government of Brazil, he is working with Ghanaian colleagues to scale up the newborn screening project into a national program. Ghana launched its National Newborn Screening Program for Sickle Cell Disease in November 2010 with Dr. Ohene-Frempong as the Program Coordinator. Dr. Ohene-Frempong is now Professor Emeritus of Pediatrics at the University of Pennsylvania, Senior Scientist and Attending Hematologist, and Director Emeritus of the Comprehensive Sickle Cell Center at The Children's Hospital of Philadelphia. He is also President of the Sickle Cell Foundation of Ghana and a founding member of the Global Sickle Cell Disease Network.
In 2010, Dr. Ohene-Frempong chaired the Organizing Committee for the 1st Global Congress on Sickle Cell Disease held in Accra, Ghana. In his work in Ghana, he is collaborating with colleagues in the US, UK, Canada, Brazil, and throughout Africa to strengthen both the public health and laboratory aspects of the National Newborn Screening Programme.
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The 2nd Specific Aim SPARCo Research Plan was to develop, implement and evaluate a resource-based, multi-level, “Guidelines for Management of SCD in SSA”, in order to standardize the care of individuals with SCD.
The Main Objectives of Specific Aim 2 were to
• Review existing standard of care guidelines (Yr. 1-2);
• Develop and compile locally feasible and consistent SCD standards of care (Yr. 1-2);
• Introduce standards of care in SPARCo sites (Yr. 3);
• Evaluate standards of care (Yr. 4); and,
• Scale-up standards of care to regional countries (Yr. 4)
The term “Guidelines” was changed to Standards of Care in order to make the recommendation less legally binding or prescriptive. A Standards of Care Working Group (SoC-WG), representing all the three SPARCo Sites was set up by Jan 2018.
Methods: Initial task of the SoC-WG was to collect and review all existing and pertinent the SCD management guidelines and protocols available at Consortium sites and internationally, concentrating on those available in English. WG members were assigned guidelines first to list the topics covered so that we could all agree on a composite set of topics to cover in the Standard (highest level) SPARCo SoC. Members were assigned topics to develop recommendations. Following internal review by members of the WG, the recommendations were submitted to the SPARCo Sites for review, editing, and comments.
The SoC members then worked on setting the categories of resource-based levels of healthcare institutions for which the Standard version would be translated. These lower levels of SoC are currently in development.
Accomplishments: To track, monitor and produce its work, the WG developed a shared spreadsheet Workbook to set goals, track assignments, monitor progress, and summarize work performed. The Standard version of the SoC has been completed and reviewed by the clinical teams of the SPARCo Sites. Work is in progress on developing the 5 scaled-down versions of the SPARCo Standards of Care.
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