Working Group 4 Report - 2010
Report of the Working Group on the “Global Sickle Cell Disease Network”

Isaac Odame
, Hospital for Sick Children, Toronto
Hani Atrash, Center for Disease Control, Atlanta

Errol Alden, -American Academy of Pediatrics, Chicago
Eiman Abdulramman, Atlanta, Georgia
Margaret Bash, National Institute of Health, Bethesda
Facundo Garcia-Bournissen, Hospital for Sick Children, Toronto
Roger Glass, Fogarty International Centre, Bethesda
Chris Anna Mink, UCLA, Los Angeles
Stacia Neale, Hospital for Sick Children Foundation, Toronto
Cathy Séguin, Sick Kids International, Hospital for Sick Children, Toronto
Roshni Kulkarni, Michigan State University, East Lansing

The participants in the working group meeting represented a variety of professional
It has been proposed that model coordinating clinical care centers in Africa through which screening, treatment and research programs can be implemented, be established. The charge to the group was to examine how these centers can best be developed and supported professionally and financially so that they can develop to their full potential as catalysts for The group discussed many issues starting with defining the goal or mission of the centers. The group agreed that the ultimate goal of the centers is to reduce morbidity and mortality in persons with SCD. Because there are currently evidence-based effective interventions, it would be realistic to set targets to be achieved within a few years. For example, reducing mortality of children less than 5 years of age with SCD by 50% within 5 years; or extending life expectancy of persons with SCD by 10 years. Process measures are also feasible; for example the proportion of persons with SCD who are immunized, receive prophylactic antibiotics or are treated with The group then discussed the eligibility criteria to be considered for being developed into regional coordinating centers. Some criteria proposed included: number of persons with SCD served per year; having an existing clinical SCD program; existing competencies to build upon (staff, lab, programs, etc); buy-in and commitment to support the center by the center leadership, staff and the government; geographic location to ensure diversity and equity; etc. It was proposed that a needs/situation assessment of interested centers be conducted using objective criteria to be developed by the leadership of the global network. This assessment would identify eligible centers and help the leaders select 2 or 3 centers to be developed into regional coordinating centers. The final decision would take into consideration geographic location, language, sustainability, and potential to serve as a regional training center. The group proposed that upon selecting the coordinating centers, work would begin to “enhance” the centers and build their capacity to become comprehensive care centers capable of offering neonatal screening and comprehensive care services, conduct surveillance to monitor interventions and their impact, and conduct implementation research to evaluate how effectively interventions are being delivered. At this stage, al stakeholders would be invited to participate in the planning and implementation of the center development and enhancement to ensure continuing support by the center leadership and staff, community leaders, consumer representatives, and local and federal government. Because of the clear differences in activities involved and the types and levels of support needed, the group proposes that work to establish and enhance the coordinating centers be
Phase I (Years 1-3):
Identify and establish model sickle cel disease coordinating centers:
Step 1:
Identify eligible centers based on expression of interest of center leadership and based
on specified objective criteria such as population served, available services, leadership commitment, government support and buy-in, etc
Step 2: Define skills and competencies required to qualify a center as a regional coordinating
center: what would be the characteristics of a regional coordinating center when fully staffed and equipped? This wil be based on input from experts in developed and
Step 3: Conduct a needs/situation assessment of the eligible centers to assess needs and

Step 4: Select regional coordinating centers based on results of assessment, geographic

Step 5: Establish, enhance and support regional coordinating centers:
Provide training at all levels (Physicians, nurses, social workers, lab technicians, Enhance ability to provide comprehensive care: Newborn screening, clinical care, community-based services, follow up services Support infrastructure: equipment and facilities, information systems, etc Develop research infrastructure: grant writing, data management, human subjects processes, surveillance, public health research
Phase II (Years 4 and 5):
Plan and conduct research to ensure effective practices:
1. Develop and submit research proposals
• Clinical (use of hydroxyurea, phenotype/genotype)
Phase III
1. Evaluate al activities on ongoing basis

2. Develop other comprehensive care centers through technical assistance to centers in
neighboring countries using the regional coordinating centers as “training hubs”

Support to the regional coordinating centers wil come mostly from sources outside the country.
Phase I support could be obtained from individual private donors and non-government organizations as well as government organizations whose missions support training and infrastructure development. One option is to “twin” selected centers with centers in developed Support for Phase II activities may be sought from US Federal agencies (CDC, NIH and HRSA) and from United Nations programs whose missions support access to services, quality improvement,


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