Project Grant UC153080

COOPERATIVE NEWBORN SCREENING SYSTEM PRIORITIES PROGRAM - THE MAINE DEPARTMENT OF HEALTH AND HUMAN SERVICES, CENTER FOR DISEASE CONTROL AND PREVENTION'S (MAINE CDC) NEWBORN BLOODSPOT SCREENING (NBS) PROGRAM IS PROPOSING THIS PROJECT TO STRENGTHEN THE NEWBORN HEALTH AND SCREENING SYSTEM TO PROVIDE SERVICES TO NEWBORNS AND CHILDREN WITH, OR AT RISK FOR, HERITABLE DISORDERS AND HELP THEM ACHIEVE THE BEST POSSIBLE OUTCOMES. MAINE CDC NBS MAINTAINS CONSISTENTLY HIGH SCREENING RATES AND TIMELINESS IN THE OVERALL NBS SYSTEM, INCLUDING HOW LONG IT TAKES THE SPECIMENS TO GET FROM THE HOSPITALS TO THE LABORATORY. THE GOAL OF THIS PROJECT IS TO ENSURE THE PROGRAM IS SUCCESSFULLY SERVING ALL FAMILIES IN MAINE BY ADDRESSING HEALTH EQUITY AND DEVELOPING A MORE COHESIVE, EFFICIENT, AND SUSTAINABLE INFORMATION SYSTEM TO SUPPORT POPULATION NEWBORN HEALTH. SPECIFICALLY, THE NBS PROGRAM PLANS TO 1) CONDUCT QUALITY IMPROVEMENT (QI) ACTIVITIES AROUND THE COLLECTION OF BLOODSPOT SPECIMENS, TESTING OF SPECIMENS, REPORTING OF RESULTS, AND IMPLEMENTING SCREENING FOR NEWLY ADDED RECOMMENDED UNIFORM SCREENING PANEL (RUSP) CONDITIONS AND 2) IMPLEMENT NEW APPROACHES TO SHORT-TERM AND LONG-TERM FOLLOW-UP BY EXPANDING ACCESS TO DIAGNOSIS AND TREATMENT RESOURCES FOR PROVIDERS AND FAMILIES WITH A SPECIAL FOCUS ON REACHING RURAL AND UNDERSERVED POPULATIONS AND EMPOWERING FAMILIES TO ACTIVELY ENGAGE IN ALL ASPECTS OF THE NBS SYSTEM. THE NBS CO-PROPEL FUNDING WILL ALLOW THE MAINE CDC NBS PROGRAM TO ACHIEVE THE PROPOSED GOALS BY DEVELOPING AN INFORMATION SYSTEM WITH INTEROPERABILITY BETWEEN HOSPITALS, BIRTHING CENTERS, MIDWIVES, PEDIATRICIANS, AND SPECIALTY PEDIATRIC PROVIDERS. THIS IS VITAL TO IMPROVING SHORT AND LONG-TERM FOLLOW-UP SERVICES. MAINE NBS WILL ENGAGE IN TECHNICAL ASSISTANCE FROM EXPERTS IN INTEROPERABILITY TO PERFORM A READINESS ASSESSMENT AND DEVELOP A ROADMAP AS WELL AS EMPLOY A FULL-TIME CONTRACTED HEALTH INFORMATICS SPECIALIST TO IMPLEMENT THE SYSTEM. THE FUNDING WILL ALSO SUPPORT THE DEVELOPMENT AND IMPLEMENTATION OF A COMMUNITY-BASED SYSTEM OF CARE THROUGH PARTNERSHIPS WITH FAMILIES, THOSE WITH LIVED EXPERIENCE, HEALTH CARE AND OTHER SERVICE PROVIDERS, AND OTHER STAKEHOLDERS. THE MAINE NBS PROGRAM EXAMINED RACE, ETHNICITY, AND TYPE OF INSURANCE FOR THE 31 BABIES BORN IN 2022, WHO WERE DIAGNOSED WITH A CONDITION: 22.5% INDICATED A RACE OTHER THAN WHITE, 3% IDENTIFIED AS HISPANIC, AND 55% WERE ON PUBLIC INSURANCE (MAINECARE) AT TIME OF BIRTH. THE NBS PROGRAM DOES NOT HAVE INFORMATION ON WHETHER BABIES WHO ARE PART OF MAINE'S UNDERSERVED POPULATIONS EXPERIENCE DIFFERENCE IN TIMELINESS OF SHORT- OR LONG-TERM FOLLOW-UP. THIS FUNDING WILL ALLOW MAINE TO EXPLORE THIS, AND IF DIFFERENCES ARE IDENTIFIED TO MAKE CHANGES TO ENSURE THAT ALL BABIES, REGARDLESS OF THESE FACTORS, MOVE THROUGH THE NBS SYSTEM AND RECEIVE THE NECESSARY FOLLOW-UP CARE WITHIN THE RECOMMENDED TIMEFRAMES.