Akcea announces first-ever research study to assess impact of FCS

Akcea Therapeutics, a subsidiary of Ionic Pharmaceuticals Inc. announced the first-ever research study of familial chylomicronemia syndrome that will assess the impact of the disease on patients, according to a press release.

This study, called the Investigation of Findings and Observations Captured in Burden of Illness Survey (IN-FOCUS), will inquiry people affected by familial chylomicronemia syndrome (FCS) via an online questionnaire.

FCS, also called lipoprotein lipase disorder, is a rare genetic disease characterized by extremely high levels of triglycerides, which can lead to potentially life-threatening pancreatitis and other complications. There are currently no approved treatments for FCS.

“By participating in the IN-FOCUS study, people living with FCS have a historic opportunity to help other patients, as well as clinicians and care providers, better understand this rare buy very serious condition,” Louis O’Dea, MD, chief medical officer of Akcea, said in the release. “This study will document the experience of patients suffering from FCS and build a new level of awareness for this under-diagnosed condition that can help guide treatment and support in the years ahead.”

Participants will be asked to share information about how FCS impacts their life, as well as document their experiences and evaluate how successfully FCS can be managed by diet and lifestyle changes alone.

The survey can be found at www.fscinfocus.com.