Sickle Cell Disease Summit
June 28-29, 2007
Washington, D.C.
Download Summit Proceedings
Download Agenda and Slide Presentations only
In the fall of 2005, the ASPHO Board determined that the greatest unmet need in patient advocacy was in non-malignant hematology, and especially sickle cell disease. To address this need, a working group was assembled with the belief that action must be taken to promote healthcare and research to benefit individuals with this devastating disease. The group proposed a summit of stakeholders to represent both organizations and constituents with specific interests and expertise in sickle cell disease. The summit was geared toward stimulating discussions on what is known and not known about SCD outcomes, attacking challenges, and developing plans of action for specifically improving those outcomes. Much was achieved through broad Federal interagency agreement (NIH, CDC, HRSA) and community involvement and commitment. The Summit was held in Washington D.C., in proximity to many Federal agencies in June of 2007.
The goal of this summitt was to develop a better funded, integrated national model for key aspects of sickle cell disease that lays the groundwork for improved outcomes for all Americans with SCD, as well as for conducting health services, outcomes, and clinical research.
The participants focused on mapping a plan applicable to sickle cell disease to learn from clinical outcome success stories known to hematologists, such as the CDC and HRSA-driven regional centers for hemophilia, and the childhood cancer cooperative group network.
Summit Outcomes:Eight major goals were established by the participants in the summit meeting:
- Access to care: removing medical, geographic, and financial barriers
- Health care delivery: Establish as many as 150 "Centers of Excellence" to serve as resources, or hubs, for directing ideal care. Care would also be delivered at the "spokes," reaching every community where children and adults with sickle cell disease live. This "hub and spoke" model could emulate other successful models, such as the CDC/HRSA/National Hemophilia Foundation model for care and outcomes.
- Defining best practices: generating guidelines for standards of care
- Population-based clinical research: Develop a national, NIH funded multi-institutional cooperative group to perform clinical research,
- Establishing population-based surveillance systems to measure outcomes
- Improving transfusion medicine services, including minority donor recruitment
- Developing a single, unified voice, representing all constituencies involved in sickle cell disease, with one goal: everyone moving forward in one direction.
- Optimizing fundraising
A white paper delineating summit findings and recommendations has been published by the American Journal of Hematology. The white paper can be found at http://www3.interscience.wiley.com/journal/121461964/abstract?CRETRY=1&SRETRY=
A large cross-organizational Unity Committee of volunteer clinicians, researchers, government and patients has been established to further the goals established at the summit. Four individual committees have been established to tackle specific challenges: Access to Care, Research, Surveillance, and Transfusion. All are meeting regularly by conference call, with minor administrative support from ASPHO.