FCS CONNECT Study
Research type
Research Study
Full title
Familial Chylomicronemia Syndrome (FCS) Connectedness Study: Impact of Social Connectedness for FCS Patients
IRAS ID
236348
Contact name
Louis St. Laurence O'Dea
Contact email
Sponsor organisation
Akcea Pharamceuticals
Clinicaltrials.gov Identifier
16/EM/0387, Investigating the Burden of Illness associated with FCS; 17/SW/0148, Retrospective Burden of Illness Study of FCS Patients on volanesorsen
Duration of Study in the UK
0 years, 2 months, 26 days
Research summary
The FCS CONNECT study (Familial Chylomicronemia Syndrome CONNECTedness Study) is an anonymous web-based patient survey. The purpose of the study is to help doctors and others better understand the impact of social connectedness on quality of life for patients with a condition called familial chylomicronemia syndrome (FCS), also known as lipoprotein lipase deficiency (LPLD) or type I hyperlipoproteinemia. FCS is a very rare cardiometabolic lipid disorder that affects roughly 1 person in 1 million and is the cause of a great deal of pain - both acute and chronic - as well as general morbidity.
As such, the results of this study will be published in a medical journal and will be used to increase awareness and understanding of the impact of social connectedness for patients with FCS among physicians, healthcare payers, and the public. This information may also be helpful to many people living with FCS as well as their families and care partners.
The CONNECT study is funded by Akcea Therapeutics, a biopharmaceutical company based in the United States, and is being conducted by Trinity Partners, a life-sciences strategy consulting firm also based in the United States.REC name
London - South East Research Ethics Committee
REC reference
17/LO/2118
Date of REC Opinion
31 Jan 2018
REC opinion
Further Information Favourable Opinion