Natural history of Familial Chylomicronaemia Syndrome

  • Research type

    Research Study

  • Full title

    A Comparison of the Natural History of Patients with and without Familial Chylomicronaemia Syndrome (FCS).

  • IRAS ID

    224563

  • Contact name

    Handrean Soran

  • Contact email

    Handrean.Soran@mft.nhs.uk

  • Sponsor organisation

    Central Manchester University Hospitals NHS Foundation Trust

  • Duration of Study in the UK

    5 years, 0 months, 1 days

  • Research summary

    Fats in the body have to be broken down by enzymes in order for them to be used for normal bodily functions. The enzymes responsible for processing large fat particles called chylomicrons include lipoprotein lipase (LpL), ApoC2, lipase mutation factor 1 (LMF1), apoA5 and glycophosphatidylinositol-anchored high-density lipoprotein binding protein 1 (GPIHBP1). If one of these enzymes is absent or is reduced in activity, fats will not be broken down properly and will accumulate abnormally in the body. A gene mutation causing any of the fat-processing enzymes to be deficient results in familial chylomicronaemia syndrome (FCS) and typically leads to raised levels of chylomicrons which are measured in the blood as triglycerides. The type of gene mutation for FCS is ‘recessive’ which means that an offspring will only express the condition if 2 affected genes are inherited. High levels of chylomicrons can cause inflammation of the pancreas (pancreatitis) and can also be associated with diabetes and heart disease. FCS is a rare inherited disease and is not well understood. \nThis study aims to examine the natural history of participants with FCS and compare it with participants without FCS to gain more knowledge of the condition. The study is coordinated from Central Manchester University Hospitals NHS Foundation Trust and will recruit the following cohorts of patients:\n•\tPatients with confirmed FCS \n•\tPatients with low LpL activity without previous genetic testing will be offered testing\n•\tPatients with raised triglycerides levels without positive genetic testing\n•\tControl patients without hypertriglyceridaemia\nThe study is non-interventional and participants consent to having their medical records examined and relevant information collected by the research team. The study is expected to be completed in 5 years.\n

  • REC name

    North West - Greater Manchester South Research Ethics Committee

  • REC reference

    17/NW/0230

  • Date of REC Opinion

    13 Jun 2017

  • REC opinion

    Further Information Favourable Opinion