Trinity Partners, a leading global life sciences consulting firm, announced that they have partnered with Akcea Therapeutics, a wholly owned subsidiary of Ionis Pharmaceuticals, Inc., to conduct the first-ever research study to understand the effects and impact of familial chylomicronemia syndrome (FCS) from the perspective of patients. In this study, called the INvestigation of Findings and Observations Captured in bUrden of Illness Survey in FCS Patients (IN-FOCUS), people affected by FCS can anonymously share information about their experience living with the condition. Akcea has partnered with Trinity for this study to leverage the company’s extensive expertise conducting research in rare diseases and burden of illness studies.

FCS, also known as lipoprotein lipase deficiency (LPLD) or type I hyperlipoproteinemia, is a rare genetic disease characterized by extremely high levels of triglycerides and increased risk of other health complications, including pancreatitis. The goal of this landmark study is to help increase awareness and understanding of FCS among physicians, healthcare payers, and the public. The companies encourage adults living with FCS around the world to access the survey at www.fcsinfocus.com.