Project Grant UC153085

COOPERATIVE NEWBORN SCREENING SYSTEM PRIORITIES PROGRAM - PROJECT ABSTRACT 4301 W. MARKHAM ST SLOT 529 LITTLE ROCK, AR 72205 PH: 501-686-7984 FX: 501-686-7998 EMAIL: LHAYS@UAMS.EDU GRANT PROGRAM FUNDS REQUESTED IN THIS APPLICATION: $1,379,501 THE ARKANSAS (AR) NEWBORN SCREENING (NBS) PROGRAM OPERATES THROUGH A MEMORANDUM OF AGREEMENT BETWEEN THE AR DEPARTMENT OF HEALTH (ADH) AND THE UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES (UAMS), WHICH PROVIDES PEDIATRIC SPECIALTY CONSULTATION FOR TIMELY DIAGNOSIS, TREATMENT, AND MANAGEMENT. UAMS PROPOSES TO IMPLEMENT PRIORITIZED IMPROVEMENTS TO THE AR NBS PROGRAM THROUGH THE ARKANSAS COORDINATED NBS EXPANSION THROUGH COLLABORATION AND TECHNOLOGY (CNECT) PROGRAM TO EFFECT STATE-WIDE SUSTAINABLE IMPACTS WHICH ALIGN WITH FOCUS AREA (FA) 1 & FA 2 OF THIS FUNDING OPPORTUNITY. FA 1. AN AR GENETIC SERVICES NEEDS ASSESSMENT OF KEY STAKEHOLDERS (HEALTHCARE PROVIDERS, EDUCATORS, POLICY MAKERS, MEDIA, AND PATIENTS/FAMILIES/ADVOCATES) SHOWED UNIVERSAL NEED FOR EDUCATION ABOUT CLINICAL GENETIC SERVICES, INCREASED ACCESS, AND REDUCED BARRIERS TO SERVICES (AR GENETICS HEALTH COMMITTEE, UNPUBLISHED 5-YEAR PLAN 2022-2026). WE AIM TO DEVELOP A NBS EDUCATIONAL PROGRAM TO INCREASE PUBLIC AWARENESS, EDUCATE HEALTHCARE PROVIDERS AND ENGAGE FAMILIES. OUR NBS PROGRAM STAFF WILL WORK CLOSELY WITH NBS EXCEL, TO DEVELOP MATERIALS AND EDUCATIONAL CONTENT ALIGNED WITH GUIDELINES AND RECOMMENDATIONS, AND PLACE CONTINUING EDUCATION MODULES ON ENDURING PLATFORMS FOR PHYSICIANS, NURSES, PHYSICIAN ASSISTANTS, AND OTHERS TO INCREASE UNDERSTANDING RELATED TO NBS TIMELINESS METRICS. WE WILL DEVELOP TOOLS (IN ENGLISH, SPANISH, AND MARSHALLESE) FOR OBSTETRICIANS, BIRTHING HOSPITALS, MIDWIVES, PEDIATRICIANS, AND FAMILY PRACTICE PROVIDERS TO ENHANCE PATIENT/PROVIDER DISCUSSIONS. THESE OBJECTIVES FALL WITHIN FA 1 OF THIS NOFO. FA 2. WE AIM TO EXPAND OUR NBS FOLLOW-UP TO ENSURE THAT ALL FAMILIES OF CHILDREN WITH NBS CONDITIONS HAVE ACCESS TO SUPPORTIVE SERVICES AFTER DIAGNOSIS, WITH CARE TO AD DRESS BARRIERS FOR THOSE IN UNDERSERVED REGIONS WITH METHODS SUCH AS EXISTING TELEHEALTH INFRASTRUCTURE IN OUR UAMS RURAL HEALTH OFFICES. ALTHOUGH WE HAVE A HIGH RATE OF REFERRALS TO PEDIATRIC HEMATOLOGY SPECIALTY SERVICES FOR NEWBORNS SCREENED POSITIVE FOR HEMOGLOBINOPATHIES FOR INITIAL EVALUATION AND COUNSELING (94% IN FY2023), WE DO NOT CURRENTLY PROVIDE COUNSELING OR FOLLOW-UP FOR FAMILIES OF NEWBORNS WITH HEMOGLOBINOPATHY TRAITS. WE WILL IMPLEMENT REFERRING FAMILIES OF NEWBORNS WITH HEMOGLOBINOPATHY TRAITS FOR FOLLOW-UP AND COUNSELING THROUGH OUR PEDIATRIC HEMATOLOGY SPECIALTY CLINIC BY SUPPORTING A FULL-TIME LICENSED CERTIFIED SOCIAL WORKER. WE WILL ALSO INCREASE KNOWLEDGE AND DECREASE BIAS BY SUPPORTING HEMOGLOBINOPATHY COUNSELOR CERTIFICATION TRAINING FOR ALL OUR NBS STAFF. THESE OBJECTIVES FALL UNDER FA 2. THROUGHOUT IMPLEMENTATION OF BOTH FA OBJECTIVES, WE WILL ACTIVELY ENGAGE WITH APHL AND NBS EXCEL TO TRACK AND REPORT ALL REQUIRED METRICS, SUCH AS METRICS ON NEWBORNS DIAGNOSED WITH SICKLE CELL UNTIL AGE THREE. WE AIM TO INCREASE: - BY 5% THE # OF NBS SPECIMENS COLLECTED WITHIN 48 HOURS OF BIRTH; - BY 10% PRESUMPTIVE POSITIVE RESULTS FOR TIME-CRITICAL CONDITIONS COMMUNICATED IMMEDIATELY TO THE NEWBORN'S HEALTHCARE PROVIDER BUT NO LATER THAN 5 DAYS OF BIRTH; - BY 5% ALL NBS RESULTS (NORMAL AND OUT-OF-RANGE) REPORTED WITHIN 7 DAYS OF BIRTH, OVERALL AND FOR ALL RACES AND ETHNICITIES. WE AIM TO DECREASE: - BY 5% THE # OF NEWBORNS WITH POSITIVE NBS LOST TO FOLLOW UP BEFORE DIAGNOSTIC CONFIRMATION. WE WILL EXECUTE A DATA USE AGREEMENT WITH NBS EXCEL AND SUBMIT ALL DATA AND PLANS. THE AR CNECT PROGRAM WILL SEEK OPPORTUNITIES FOR STAFF, AND INDIVIDUALS AND FAMILY MEMBERS OF THOSE WITH NBS CONDITIONS TO PARTICIPATE IN ACTIVITIES AND COMMITTEES OF THE NBS EXCEL AND OTHER ORGANIZATIONS THAT SUPPORT INDIVIDUALS AND FAMILIES DIAGNOSED WITH NBS CONDITIONS.