September 23, 2020

Survey will help to guide treatment for malady that disrupts well-being for millions

The Restless Legs Syndrome (RLS) Foundation today, international RLS Awareness Day, has launched a research study on the challenges of living with RLS.

Through RLS patient and spouse/partner surveys, the RLS Patient Odyssey Survey II will evaluate treatment strategies, emotional well-being, relationships and lifestyle of people living with RLS, adding to the body of knowledge about the burden of disease and identifying focus areas for future education and research.

The RLS Patient Odyssey Survey II is the second survey developed by the RLS Foundation. More than 2,200 people participated in the first survey in 2013. Findings from the initial survey were published in the journal Sleep Medicine and disseminated broadly.

The current survey will gather updated and expanded data, and is particularly focused on the RLS patient experience with regard to treatments and medical care. People with RLS and their spouses/partners are encouraged to visit www.rls.org/odyssey to participate from Sept. 23 to Oct. 23.

Specifically, the study aims to:

• Understand the experiences of RLS patients with medical treatment and symptom management
• Provide data to researchers on the long-term burden of disease, including impact on spouses and partners
• Promote awareness that RLS is a serious neurological disorder
• Provide resources for RLS patients to facilitate decision-making with their healthcare providers

“RLS is a serious disease that can have a devastating impact on quality of life,” says Karla Dzienkowski, executive director of the RLS Foundation. “We have come a long way to advance treatments and research, but today's treatments are limited, and there is no cure. RLS patients still face significant daily challenges in managing the disease. This study will provide data to accelerate and focus our efforts to address these challenges and improve quality of life for RLS patients and their families.”

An estimated 12 million men, women and children in the US have RLS, and one in 33 adults (3%) needs daily medical treatment to manage symptoms. People with RLS experience an agitating and overwhelming urge to move their legs that can only be relieved by moving. RLS is at its strongest at night and severely disrupts sleep, robbing people of the ability to work and live normally while simultaneously raising the risk for hypertension, diabetes, heart disease and Alzheimer’s disease.

Results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature and presented at scientific meetings. Findings will also be shared with health policymakers in the RLS Foundation's legislative agenda and advocacy materials.

The RLS Patient Odyssey Survey II was designed by members of the RLS Foundation’s Scientific and Medical Advisory Board, Board of Directors, and staff. The survey is made possible by an educational grant from Arbor Pharmaceuticals.