Surveillance & Tracking for EHDDI in WA Debra Lochner Doyle, MS, CGC February 2003

~80,000 births per year 70 birthing hospitals Project 83% infants screened in 2003

Building the system… Three components of NBS - Phase I and Phase II Focus on ease of reporting Complete system with built in assurances

How is the EHDDI system populated? Utilizes data already collected by Newborn Dried Blood Spot Screening Program. –Demographics –Physician/Facility Directories –Birth Rosters Revised blood spot card includes additional form to collect hearing results. Developed separate re-screen card.

Washington NBS Form Slide created by National Newborn Screening and Genetics Resource Center

Washington NBS Form Hearing Information Results Can be Placed in Hospital Chart – Peel off Tape on Back For Risk Factors, See Next slide Slide created by National Newborn Screening and Genetics Resource Center

Washington NBS Form Hearing Information (Back of Form) Slide created by National Newborn Screening and Genetics Resource Center

EHDDI Re-Screen Form Enter EHDDI ID # from Infants Initial Pink Card

Back of Re-Screen Form

Pilot Hospitals - dried blood screen -hearing results -birth rosters EHDDI SYSTEM DOH NBS -process all cards Specialists Patient QA Reports EHDDI Data Flow WEDSS Primary Care Provider

EHDDI Main Screen

EHDDI Patient Screen

EHDDI Letter Generation

Future Plans Pilot Phase II until January 2004 Revise system as necessary Open for statewide implementation If no mandate – hospitals would subscribe to service.

Summary Developed a T&S system that allows us to: –Identify newborns who have not been screened –Track infants with risk factors –Track infants needing Dx Confirmation Now piloting Phase II that will allow us to: –Ensure infants are referred for Dx Conf. –Identify infants with hearing loss –Ensure families are referred for Early Intervention