Congenital Hypothyroidism- Gland in Situ: Risk Factors and Outcomes
Research type
Research Study
Full title
Congenital Hypothyroidism with Gland in Situ: establishing risk factors and outcomes using population-based data linkage methods
IRAS ID
285519
Contact name
Pia Hardelid
Contact email
Clinicaltrials.gov Identifier
Z6364106/2020/07/68, Data Protection Number UCL Health Research
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
All children in the UK are offered screening for a number of rare conditions at five days of age. One of these conditions is congenital hypothyroidism (CH), which without early detection and treatment can result in severe learning disability. Since the introduction of newborn screening 40 years ago, there has been an increase in the proportion of babies born with CH, particularly a type called congenital hypothyroidism with gland in situ (CH-GIS). The thyroid gland in children with CH-GIS does not produce sufficient hormones for healthy growth and development. We do not know why CH-GIS is becoming more common, or how it affects health, development and learning as children grow up.
The aim of this study is to determine why more babies are being diagnosed with CH-GIS, and what health and development is like for children living with this condition. We will use data that are routinely collected in state schools and the National Health Service in North London and surrounding counties, including newborn screening records and clinical data on children with CH. We will link these data together to create health and education histories for children, including data on other health conditions, special educational needs and school grades. We will compare these histories between children with CH-GIS, children with other forms of CH, and unaffected children.
Our results will inform parents and children about the health and education consequences of congenital CH-GIS, and clinicians about which treatment regimen is best for children’s health and development. The results will also provide a basis for developing future public health prevention initiatives.
REC name
London - Queen Square Research Ethics Committee
REC reference
20/LO/1216
Date of REC Opinion
1 Dec 2020
REC opinion
Favourable Opinion