Working Group 4 Report - 2010 Report of the Working Group on the “Global Sickle Cell Disease Network” Chairs Isaac Odame, Hospital for Sick Children, Toronto Hani Atrash, Center for Disease Control, Atlanta Participants: 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: 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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