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Trends in Scottish newborn screening programme for congenital hypothyroidism 1980-2014: strategies for reducing age
Chourouk Mansour1, Yasmine Ouarezki2, Jeremy Jones3
1Hôpital Universitaire d'Enfants Abderrahim Harouchi, Casablanca, Morocco.
Insights
Scottish newborn screening for congenital hypothyroidism meets most standards, with improvements in timely sampling and notification. However, reducing notification delays after second sampling is crucial for better infant outcomes.
Area of Science:
- Neonatal screening
- Endocrinology
- Public health
Background:
- Congenital hypothyroidism (CH) requires early detection and treatment to prevent developmental issues.
- Newborn screening programs aim to identify CH through elevated thyroid-stimulating hormone (TSH) levels.
- The Scottish program monitors screening and notification timelines to ensure timely intervention.
Purpose of the Study:
- To evaluate the timeliness of capillary sampling and notification in Scottish newborns with elevated TSH.
- To assess trends in these timings over a 35-year period (1980-2014).
- To identify areas for improvement in the screening process, particularly for infants requiring repeat sampling.
Main Methods:
- Analysis of referral data for newborns screened between 1980 and 2014.
- Grouping data into seven 5-year blocks for trend analysis.
- Comparison of median ages at first sampling, notification, and notification after second sampling against established standards.
Main Results:
- Median age at first capillary sampling decreased from 7 to 5 days between 1980-2014.
- Median age at notification remained consistently under 14 days, with decreasing ranges over time.
- A notable proportion of infants (14.6%) had notification delays exceeding 26 days after second sampling, particularly from 2000 onwards.
Conclusions:
- The Scottish newborn thyroid screening program largely adheres to established standards.
- There is a need to optimize the notification process, especially for infants requiring repeat testing.
- Strategies such as timely capillary sampling, rapid laboratory reporting, and electronic communication are recommended to enhance screening efficiency.
Objectives:
To determine ages at first capillary sampling and notification and age at notification after second sampling in Scottish newborns referred with elevated thyroid-stimulating hormone (TSH).
Subjects And Methods:
Referrals between 1980 and 2014 inclusive were grouped into seven 5-year blocks and analysed according to agreed standards.
Results:
Of 2 116 132 newborn infants screened, 919 were referred with capillary TSH elevation ≥8 mU/L of whom 624 had definite (606) or probable (18) congenital hypothyroidism. Median age at first sampling fell from 7 to 5 days between 1980 and 2014 (standard 4-7 days), with 22, 8 and 3 infants sampled >7 days during 2000-2004, 2005-2009 and 2010-2014. Median age at notification was consistently ≤14 days, range falling during 2000-2004, 2005-2009 and 2010-2014 from 6 to 78, 7-52 and 7-32 days with 12 (14.6%), 6 (5.6%) and 5 (4.3%) infants notified >14 days. However 18/123 (14.6%) of infants undergoing second sampling from 2000 onwards breached the ≤26-day standard for notification. By 2010-2014, the 91 infants with confirmed congenital hypothyroidism had shown favourable median age at first sample (5 days) with start of treatment (10.5 days) approaching age at notification.
Conclusion:
Most standards for newborn thyroid screening are being met by the Scottish programme, but there is a need to reduce age range at notification, particularly following second sampling. Strategies to improve screening performance include carrying out initial capillary sampling as close to 96 hours as possible; introducing 6-day laboratory reporting and use of electronic transmission for communicating repeat requests.
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