Registry and Surveillance System for Hemoglobinopathies -- RuSH : strategies from the field : Health promotion
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Registry and Surveillance System for Hemoglobinopathies -- RuSH : strategies from the field : Health promotion

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    In 2010, the Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project was implemented by the Centers for Disease Control and Prevention (CDC) to collect state-specific, population-based data on people with sickle cell disease (SCD) and thalassemia. The pilot project is being supported and conducted in collaboration with the National Institutes of Health’s National Heart, Lung, and Blood Institute.

    Overall project goals include determining the number of people who have SCD and thalassemia and increasing knowledge and awareness about health care use and outcomes. Currently, seven states are funded to participate in data collection: California, Florida, Georgia, Michigan, New York, North Carolina, and Pennsylvania. In addition to collecting and linking their unique data to help reach these goals, the states also have planned and implemented health promotion initiatives designed to increase awareness about RuSH in the affected communities to aid in the data collection.

    The purpose of this document is to showcase some of the unique ways in which the states have implemented activities designed to meet the programmatic goals of RuSH. In the following sections, each state highlights one of their many programs and features information about the resources needed to operate or replicate the activity, as well as intended benefits and outcomes, and provides a set of lessons learned to readers. Intended aims of this document are the provision of contact and programmatic information to other entities for the potential modification or replication, or both, of activities.Additionally, this document can be used to inform and motivate appropriate community members in the creation of a supportive environment for the RuSH program to assist the program in moving forward.

    The information in this report was provided by programmatic team members who worked with CDC staff in fall 2011.

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  • Content Notes:
    Overview -- Strategy Field Reports: Putting the Focus on Sickle Cell: Northern California’s Focus Group and Stakeholder Meetings; Resource STREET: Sickle Cell Disease and Thalassemia Resources to Educate and Empower the Community — An Online Database Serving Southern California; Connecting the Dots: Building a Provider Network and Directory in Florida; Finding Our Voice: Creating and Implementing a Community Speaker Panel in Georgia; Measuring Michigan’s Health: A Hemoglobinopathy Health Status Assessment; Garnering State-wide Support for RuSH: Regional Provider Meetings in New York; Faith-based Initiative: North Carolina’s Approach to Community Outreach for Hemoglobinopathies; Answering the Call: Pennsylvania’s Toll-free Phone Number for Hemoglobinopathy Health Care Referrals -- Acknowledgements.
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