Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
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Appendix E: Sickle Cell Data Collection Program
Appendix E: Sickle Cell Data Collection Program
Pages 445-448
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Foundation in collaboration with the CDC Division of Blood Disorders, the California Rare Disease Surveillance Program, the Georgia Health Policy Center, Pfizer Inc., Global Blood Therapeutics (GBT) , Sanofi, and the Doris Duke Charitable Foundation.
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The collected data are used to improve public policy and study long-term trends that may appear in diagnosis, treatment, and health care access within the United States. PATIENT AND PUBLIC ENGAGEMENT The SCDC program engages patients and the public by sharing all findings with patients and patient advocates, public health organizations, SCD community organizations, providers, health care administrators, pharmaceutical companies, and policy makers.
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From page 447... ...
APPENDIX E 447 RESULTS Because of extensive data collection, the SCDC program successfully identifies gaps in the areas of diagnosis, treatment, and health care status for SCD patients and the medical community.
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