The National Sickle Cell Advocate Network (NSCAN)

NSCAN, with the assistance of an Expert Advisory Committee, will develop and implement a patient-centered training curriculum and mentor program in an effort to: Receive updates from clinicians and patients regarding therapeutic options for SCD Determine/develop relevant patient outcome measures for SCD Create partnerships with academic institutions, industry, and foundations to advance PCOR/CER projects Increase SCD patient partnering with clinicians on PCOR/CER projects. Upon completion of a developed curriculum and implemented program, 25 trained patient/parent facilitators will expand the network in their respective areas/states to 50 additional network participants/facilitators, an effort to educate over 625 advocates. Project Collaborators: SCDAA has enlisted several collaborators to ensure the success of this project. Such collaborators include: The SCDAA Medical Advisory Council, 42 community-based member organizations, The New Jersey Sickle Cell Association, Inc., and Leidos, Inc.