KiLTS Study

• Research type

  Research Study

• Full title

  Kids Liver Trends in Scotland (KiLTS) Study – a Wee Scottish Livers Project

• IRAS ID

  279258

• Contact name

  Paul Henderson

• Contact email

  Paul.Henderson@nhslothian.scot.nhs.uk

• Sponsor organisation

  NHS Lothian

• Duration of Study in the UK

  1 years, 3 months, 1 days

• Research summary

  The number of children with chronic liver disease living in the United Kingdom (UK) is not known. Although single centres have tried to answer this question there is very little accurate population-based research. This study has a number of strands to help answer this question and to provide a sound infrastructure for future studies. We will first create a unique, Scotland-wide, database of all children with chronic liver disease from separate regional records. This will by default create the Scottish Paediatric Liver Transplant Registry. We will also record in real-time each new diagnosis of all chronic liver diseases in childhood over a 15-month period. This will provide the first accurate data on the number of new cases diagnosed each year within a defined population. Information from these stages will immediately provide important information about the estimated number of patients diagnosed in each area of the UK, allowing the NHS and charities to provide better care by understanding what resources are required.
  This study will also create a group of paediatric chronic liver disease patients who can be followed up longer term (the KiLTS cohort). Following completion of this project, and with further funding, this group of patients will allow detailed research of what happens to these patients throughout their life (for example who uses certain medicines or requires surgery). It will also help us to understand how patients use the NHS (for example how many outpatient appointments or admissions are required) and therefore the cost of each patient’s care. While undertaking the study the research team will also begin planning/developing two further projects: (1) the Scottish Paediatric Liver Diseases Administrative Healthcare Database; and (2) the Scottish Paediatric Chronic Liver Diseases Biobank to produce high quality research studies and robust epidemiology in the future.

• REC name

  Yorkshire & The Humber - Leeds East Research Ethics Committee

• REC reference

  22/YH/0050

• Date of REC Opinion

  15 Mar 2022

• REC opinion

  Favourable Opinion