REVEAL FPL
Research type
Research Study
Full title
Investigation of Findings and Observations Captured in Burden of Illness Survey in FPL Patients
IRAS ID
239843
Contact name
Louis St. Laurence O'Dea
Contact email
Sponsor organisation
Akcea Therapeutics
Duration of Study in the UK
0 years, 1 months, 14 days
Research summary
The REVEAL FPL study is an anonymous web-based patient survey. The purpose of the study is to help the medical community better understand the effects of a condition called Familial Partial Lipodystrophy (FPL). FPL is a very rare lipid disorder that affects roughly 1 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 FPL among physicians, healthcare payers, and the public. This information may also be helpful to many people living with FPL as well as their families and care partners.
The REVEAL FPL 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
Wales REC 7
REC reference
18/WA/0080
Date of REC Opinion
23 Mar 2018
REC opinion
Further Information Favourable Opinion