Opportunity to add to knowledge about FCS
A Comparison of the Natural History of Patients with and without Familial Chylomicronaemia Syndrome (FCS)
What is the purpose of the study?
Lack of enzymes to break down large fat particles called chylomicrons results in build-up of these particles which may have harmful consequences. The lack of enzymes is caused by genetic mutation and the condition is called Familial Chylomicronaemia Syndrome (FCS). Individuals with FCS have high levels of triglycerides that can trigger inflammation of the pancreas (pancreatitis) which is a serious ailment. They may also be at risk of developing heart disease. FCS is not common and relatively little is known about it. This study looks at the natural history of FCS in order to improve our understanding of the condition and eventually develop ways to help individuals with the condition to manage it more effectively.
What will happen to me if I take part?
If you decide to take part in the study, all we ask is access to your medical records from both primary and secondary care. These will either be reviewed by a member of the research team or information will be extracted by NHS Digital. You will be given a study ID number and only information relating to FCS will be collected from your medical notes. All collected study data will be anonymised. No study visit is needed. If you consent to have your medical records reviewed, we will send you a Marks & Spencer voucher of £25 as a thanks token.
What are the possible benefits if I take part?
Although there are no immediate benefits, you will have the satisfaction of knowing that you have contributed to a study that may lead to better understanding and better management of individuals with FCS.
What should I do if I decide to take part?
At present, patients with FCS are recruited from the Lipid Clinics at Manchester Royal Infirmary, Birmingham Heartlands Hospital, University Hospitals Birmingham, Guy’s and St Thomas’ Hospital London. If you are not attending the Lipid Clinics at these hospitals but you have been told that you have FCS and you are interested in the study, please contact the following for further information:
Dr Handrean Soran
Cardiovascular Trials Unit,
The Old St Mary’s Hospital
Manchester M13 9WL
Research administrator Tel: 0161 276 8946, Fax: 0161 276 4924