Current Status of Newborn Screening in Southeastern and Central Europe

Nika Požun1, Daša Perko1, Violeta Anastasovska2

  • 1Clinical Institute for Special Laboratory Diagnostics, University Children's Hospital, Ljubljana University Medical Center, Vrazov trg 1, 1000 Ljubljana, Slovenia.

Insights

Newborn screening (NBS) programs in Central and Southeastern Europe show progress but face challenges. Expanding screening for rare diseases requires addressing financial and staffing barriers for equitable access.

Area of Science:

  • Public Health
  • Genetics
  • Pediatrics

Background:

  • Newborn screening (NBS) is crucial for early detection and treatment of rare infant disorders.
  • Significant variations exist in NBS program scope and implementation across Southeastern (SE) and Central Europe.
  • Previous assessments highlighted the need for updated information on NBS practices in the region.

Purpose of the Study:

  • To evaluate the current status and progress of NBS programs in 16 SE and Central European countries.
  • To identify advancements and persistent challenges in NBS implementation since 2021.
  • To inform strategies for enhancing NBS program effectiveness and equity.

Main Methods:

  • A structured questionnaire was administered to national experts across 16 countries from April to December 2025.
  • Data collected covered program organization, disease coverage, laboratory techniques, confirmatory testing, consent, and expansion plans.
  • Analysis focused on comparing current practices with previous findings and identifying trends.

Main Results:

  • Universal screening for congenital hypothyroidism is reported in most countries; NBS is establishing in Kosovo.
  • Expanded NBS using tandem mass spectrometry is available in 9 countries.
  • Spinal muscular atrophy screening is now universal in 5 countries, with plans for further expansion targeting conditions like cystic fibrosis.

Conclusions:

  • While infrastructural progress in NBS is evident, financial, staffing, and organizational barriers persist.
  • The lack of region-wide performance indicators hinders comprehensive program effectiveness assessment.
  • Regional collaboration and best practice adoption are essential for advancing NBS equity and continuous improvement.