Cooperative Agreement U01HL156853

SICKLE PAN-AFRICAN RESEARCH CONSORTIUM (SPARCO)- TANZANIA - PROJECT SUMMARY THE BURDEN OF SICKLE CELL DISEASE (SCD) IS HIGHEST IN SUB-SAHARAN AFRICA (SSA) WHERE OVER 75% OF PATIENTS CURRENTLY RESIDE. TANZANIA IS ONE OF THE COUNTRIES MOST AFFECTED BY THE DISEASE WITH AN ESTIMATED 11,000 BIRTHS A YEAR, THE 5TH HIGHEST IN THE WORLD. MAJOR CHALLENGES IN ADDRESSING THE BURDEN OF SCD IN SSA HAVE BEEN THE LACK OF MULTI-SITE, WELL DESCRIBED COHORTS OF SCD PATIENTS; FAILURE TO DEPLOY CONSISTENT STANDARDS OF CARE; HUMAN RESOURCE CAPACITY THAT IS LIMITED IN NUMBER AND SKILLS AND LIMITED RESEARCH IN AREAS PERTINENT TO SCD IN THE AFRICAN CONTEXT. IN 2017 THREE SSA COUNTRIES, TANZANIA, GHANA AND NIGERIA, TEAMED UP TO ESTABLISH THE SICKLE PAN-AFRICAN RESEARCH CONSORTIUM (SPARCO) TO ADDRESS THESE CHALLENGES. BUILDING ON SUCCESSES ACHIEVED TO DATE, SPARCO-TANZANIA AIMS TO EXPAND AS THE CENTER OF EXCELLENCE IN TRAINING AND RESEARCH IN SCD WITH THE LONG TERM GOAL TO ADVANCE THE CARE FOR SCD AND CONTRIBUTE TO THE CONSORTIUM IN GENERATING EVIDENCE THAT WILL INFORM THE DEPLOYMENT OF EFFECTIVE INTERVENTIONS IN SSA. SPECIFICALLY, SPARCO-TANZANIA AIMS TO 1) ENHANCE COMMUNICATION AND COLLABORATION WITH MEMBERS OF THE SCD IN SSA NETWORK TO ENGAGE IN CONTINENT-WIDE RESEARCH AND CREATE A "POLICY TRANSLATION GROUP" THAT WILL EMBED EVIDENCE-BASED BEST PRACTICES IN NATIONAL POLICY, 2) INCREASE THE QUANTITY AND QUALITY OF DATA IN THE SPARCO DATABASE BY I) INCREASING THE NUMBER OF ENROLLED SCD PATIENTS TO 7,000 BY INTEGRATING A NEW SATELLITE SITE IN ZANZIBAR AND IMPLEMENTING NEWBORN SCREENING (NBS) ACROSS THE COUNTRY, (IN COLLABORATION WITH THE AMERICA SOCIETY OF HEMATOLOGY); II) USING SMS REMINDERS AND AGE-SPECIFIC PATIENT EDUCATIONAL PROGRAMS TO BOOST CLINIC ATTENDANCE AT FOLLOW-UP VISITS TO COLLECT LONGITUDINAL DATA; 3) ENHANCE THE UTILIZATION OF THE CUSTOMIZED MULTI-LEVEL SCD STANDARDS OF CARE (SOC) IN THE TANZANIAN HEALTH SYSTEM BY ENGAGING WITH THE MINISTRY OF HEALTH TO PROMOTE THE ADOPTION AND USE OF THE SOC FROM TERTIARY CARE LEVEL TO HOME; 4) PARTNER WITH EXISTING PROGRAMS IN AND OUTSIDE THE CONSORTIUM TO CONDUCT SHORT, MEDIUM AND LONG TERM TRAINING AND FELLOWSHIP PROGRAMS ON THE CLINICAL MANAGEMENT AND RESEARCH ON SCD TO STRENGTHEN SKILLS IN SCD CARE AND RESEARCH; AND 5) CONDUCT COHORT STUDIES TO IMPROVE UNDERSTANDING OF CURRENT STATUS OF THE DISEASE AND RISK-MODIFIERS (SPECIFICALLY ON THE GENETIC VARIABILITY IN FETAL HEMOGLOBIN AND KIDNEY DYSFUNCTION AND EFFECT OF HYDROXYUREA ON IMMUNE ACTIVATION), AND IMPLEMENTATION RESEARCH TO EVALUATE PLANNED INTERVENTIONS (SPECIFICALLY THE FEASIBILITY, ACCEPTABILITY AND SUSTAINABILITY OF NBS, HYDROXYUREA USAGE AND MALARIA PROPHYLAXIS) AIMING AT ELUCIDATING BEST APPROACHES TO SCALE-UP INTRODUCTION OF THESE PREVENTIVE AND THERAPEUTIC INTERVENTIONS IN THE LOCAL CONTEXT. COLLECTIVELY, THE PROJECT WILL INCREASE THE AMOUNT AND QUALITY OF DATA ON SCD IN SSA, ENABLE GROWTH OF A CRITICAL MASS OF RESEARCHERS AND GENERATE EVIDENCE THAT WILL INFORM POLICY CHANGE WHICH, CONCURRENT WITH THE GROWTH IN THE STANDARDS OF CARE, WILL LEAD TO THE REDUCTION IN THE MORBIDITY AND MORTALITY DUE TO SCD IN SSA.