Judi Marie Tuerck, Assistant Professor, Oregon Health & Science University, Child Development and Rehabilitation Center, has returned from a successful presentation at the 6th Meeting of the International Society for Neonatal Screening (ISNS) held 16-19 September 2006 in Awaji, Hyogo & Tokushima, Japan.

Eye-Opening Poster Session Draws Large Attendance and Captures One of the “Best of Meeting” Nominations

The poster session, which focused on the recently published CLSI document, Newborn Screening Follow-up; Approved Guideline (I/LA27-A), attracted 300 attendees from 53 countries. I/LA27-A describes the basic principles, scope, and range of follow-up activities within a newborn screening system.

Lois Schmidt, DA, CLSI Director, Standards and Development, comments, “The overwhelming positive response to the conference session confirms that the international community is primed to learn about the critical need for newborn screening follow-up and timely intervention to avoid harm to or death of affected newborns.”

The poster session was also selected as one of the six out of 163 “Best of Meeting” sessions. Tuerck explains, “The activity and interest of the attendees was tremendous.” She adds, “I was busy talking to attendees the entire time and handed out many flyers, guideline excerpt previews, and coupons to purchase the CLSI document.”

CLSI Executive Vice President Glen Fine, MS, MBA, declares, “Thanks to the hard work and dedication of volunteers, who are CLSI’s strong promoters and champions, we are able to continue the successful work of developing globally applicable standards and best practices and achieve our goals.”

Effective and Efficient Newborn Screening Follow-up

The guidelines stated in I/LA27-A are intended to be used worldwide by public health officials and those involved in any aspect of follow-up within newborn screening systems. They include: maternity healthcare providers, hospital personnel, newborn healthcare providers, pediatric subspecialty providers (e.g., hematology, endocrinology, metabolism, pulmonology, genetics, and audiology), parents and families, other providers involved with the care of newborns, public health personnel, confirmatory clinical laboratories, and newborn screening program personnel.

Systems for newborn hearing screening (NHS) and dried blood spot (DBS) screening are comprised of screening, follow-up, diagnosis, management, evaluation, and education. Follow-up is essential to ensure that valid screening results are known for every eligible newborn, that all out-of-range results are followed to definitive diagnosis and appropriate clinical management, and that long-term data are collected for program assessment and quality assurance.¹

I/LA27-A provides a reference for developing both short- and long-term follow-up, specifically focused on NHS and DBS screening. However, it is also applicable to other types of universal newborn screening. Follow-up activities are an integral part of a newborn screening system. The overarching follow-up principles should be:
• centralized;
• uniform across condition and jurisdictions;
• prioritized;
• active for abnormal and inadequate cases;
• accomplished quickly;
• resolved for all cases; and
• evaluated.

Schmidt adds, “Hopefully, the global interest and use of this document will have a positive impact on the health and well-being of newborns and families in the future.”

In addition to the new I/LA27-A document, CLSI has produced several other widely used resources related to the health of newborns, including: Blood Collection on Filter Paper for Newborn Screening Programs; Approved Standard—Fourth Edition (LA4-A4), and the corresponding videotape, Making a Difference Through Newborn Screening: Blood Collection on Filter Paper (LA4-A3-V).

For more information about ISNS, visit http://www.isns-neoscreening.org/

1. Clinical and Laboratory Standards Institute (CLSI). Newborn Screening Follow-up; Approved Guideline. CLSI document I/LA27-A (ISBN 1-56238-606-9). Clinical and Laboratory Standards Institute, 940 West Valley Road, Suite 1400, Wayne, Pennsylvania 19087-1898 USA, 2006. [ return to top ]