Center For Comprehensive Care And Diagnosis Of Inherited Blood

SICKLE CELL TREATMENT DEMONSTRATION PROGRAM

HEMOPHILIA TREATMENT CENTERS (SPRANS)

HEMOPHILIA TREATMENT CENTERS (SPRANS)

SICKLE CELL TREATMENT DEMONSTRATION PROGRAM

THE SICKLE CELL DISEASE REGIONAL QUALITY CARE PROGRAM (SORCE-Q) - THE CENTER FOR COMPREHENSIVE CARE AND DIAGNOSIS OF INHERITED BLOOD DISORDERS (CIBD) PROPOSES TO SERVE AS THE REGIONAL COORDINATING HUB (RCH) FOR THE SICKLE CELL DISEASE REGIONAL CARE EXCELLENCE (SORCE) PROGRAM, WEST REGION, BUILDING AND SUSTAINING A CLINICAL-COMMUNITY SPOKE (CCS) NETWORK ACROSS THE 13 STATES AND TERRITORIES OF THE WEST REGION TO EXPAND ACCESS TO HIGH-QUALITY SICKLE CELL DISEASE (SCD) CARE AND IMPROVE HEALTH OUTCOMES FOR AN ESTIMATED 7,600 INDIVIDUALS LIVING WITH SCD. DESPITE SIGNIFICANT ADVANCES IN DISEASE-MODIFYING THERAPIES (DMTS) AND COMPREHENSIVE CARE MODELS, PEOPLE WITH SCD IN THE WEST REGION FACE PERSISTENT BARRIERS TO SPECIALTY CARE, INCLUDING GEOGRAPHIC ISOLATION, LIMITED ACCESS TO SCD-KNOWLEDGEABLE PROVIDERS, INADEQUATE CARE COORDINATION AT THE PEDIATRIC-TO-ADULT TRANSITION, AND INSUFFICIENT COMMUNITY-BASED SUPPORT INFRASTRUCTURE. MANY ELIGIBLE INDIVIDUALS ARE NOT RECEIVING DMTS, AND AVOIDABLE EMERGENCY DEPARTMENT UTILIZATION REMAINS HIGH ACROSS THE REGION. CIBD, IN PARTNERSHIP WITH THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO SICKLE CELL CENTER OF EXCELLENCE, (UCSF SCCOE) THE SICKLE CELL DISEASE FOUNDATION (SCDF), AND FIVE CLINICAL-COMMUNITY SPOKES (CCSS) IN CALIFORNIA, NEVADA, WASHINGTON, AND ARIZONA, WILL DELIVER A COORDINATED REGIONAL MODEL THAT INCLUDES: CLINICAL-COMMUNITY LINKAGE COORDINATION THROUGH TRAINED COMMUNITY HEALTH WORKERS USING THE PEAR SUITE PLATFORM; MONTHLY PROJECT ECHO TELE-MENTORING AND A REGIONAL LEARNING HEALTH SYSTEM TO BUILD SCD PROVIDER CAPACITY; CONTINUOUS QUALITY IMPROVEMENT (CQI) PROJECTS TARGETING ACCESS TO CARE, DMT UPTAKE, AND CARE TRANSITIONS; AND ACTIVE ENGAGEMENT AND COMPENSATION OF INDIVIDUALS WITH SCD AND THEIR FAMILIES IN PROGRAM PLANNING AND EVALUATION. SCDF WILL COORDINATE THREE STATE-LEVEL CBO PARTNERS IN NEVADA, WASHINGTON, AND ARIZONA TO ENSURE COMMUNITY-BASED REACH ACROSS THE REGION. THE WEST REGION SORCE NETWORK WILL SCALE POPULATION REACH, IMPACT, ADOPTION AND IMPLEMENTATION OF BEST PRACTICES, AND SUSTAINABILITY THROUGH ITS CCSS, CLINICAL AFFILIATES AND ACCESS POINTS. THE WEST REGION SORCE NETWORK WILL SERVE INDIVIDUALS WITH SCD OF ALL AGES AND THEIR FAMILIES ACROSS ALASKA, ARIZONA, CALIFORNIA, COLORADO, HAWAII, IDAHO, MONTANA, NEVADA, NEW MEXICO, OREGON, UTAH, WASHINGTON, WYOMING, AND AFFILIATED PACIFIC TERRITORIES, WITH PRIORITY FOCUS ON POPULATIONS IN RURAL, FRONTIER, TRIBAL, AND PACIFIC ISLAND COMMUNITIES. BY AUGUST 31, 2030, THE NETWORK WILL SERVE AT LEAST 30% OF THE ESTIMATED REGIONAL SCD POPULATION AND INCREASE DMT UTILIZATION BY 5% ABOVE YEAR 1 BASELINE.

REGION IX COMPREHENSIVE HEMOPHILIA CARE PROGRAM