Restless Legs Syndrome Foundation Blog

August 28, 2020

Take the RLS Patient Odyssey Survey to help advance RLS research, treatments and awareness!

On Sept. 23, RLS Awareness Day, the RLS Foundation will launch a new research study on the challenges of living with RLS. The RLS Patient Odyssey Survey II will evaluate RLS treatment strategies, emotional well-being, relationships and lifestyle, adding to the body of knowledge about the burden of disease and identifying focus areas for future education and research.

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 help facilitate decision-making with their healthcare providers on medical treatments to manage their disease

RLS Patient Odyssey Survey II is the second survey developed by the RLS Foundation. Findings in the 2013 first survey were published in the the Journal of Sleep Medicine and disseminated broadly. RLS Patient Odyssey Survey II will gather updated and expanded data in areas such as symptom management, experience with healthcare providers, and ways in which the disease affects daily life and emotional well-being.

The current survey is particularly focused on the RLS patient experience, especially with regard to treatments and medical care. The survey was designed by a work group comprised of RLS Foundation Scientific and Medical Advisory Board members Brian Koo, MD, William Ondo, MD and John Winkelman, MD; Board of Directors member Jeffrey Durmer, MD, PhD; and staff members Karla Dzienkowski, Maddie Lionberger and Zibby Crawford. The survey is made possible thanks to an educational grant from Arbor Pharmaceuticals.

RLS Foundation members and nonmembers alike are encouraged to participate in the study, which will consist of two online surveys: one for RLS patients, and one for partners. To participate, visit www.rls.org/odyssey from Sept. 23 to Oct. 23. See below for details. Survey results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature, and presented in scientific meetings. Findings will also be shared with health policymakers in Washington, DC in the RLS Foundation legislative agenda and advocacy materials.

“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 future generations of their families.”

We need you to help advance RLS research, treatment and awareness by taking the Patient Odyssey Survey!

Your voice matters! You live with RLS every day, and your input is critical to helping researchers, healthcare providers and policymakers understand the impact of RLS on daily life and where to focus their efforts.

Here’s what you need to know:

• Access the survey starting on RLS Awareness Day: Wednesday, Sept. 23, at www.rls.org/odyssey.
• There are separate surveys for RLS patients and their spouses/partners (living in the same household).
• The patient and partner surveys take about 45 and 20 minutes to complete, respectively. You do not have to complete the survey in one sitting.
• You do not need to be a member of the RLS Foundation to participate.
• The surveys are anonymous; no individual identifying information is requested.
• We strongly encourage everyone to take the online survey, if possible. However, those without internet access or in need of accommodations can request a mail-in survey. Contact the RLS Foundation at info@rls.org or 512-366-9109.
• The last day to participate is Friday, Oct. 23.

Mark your calendar for Sept. 23 to take the survey, and please share the link with others. You can also visit www.rls.org/odyssey to download a one-page flyer to hand out or post on bulletin boards in your community. Thank you!

Questions? Contact Maddie Lionberger, Research Coordinator, at maddie@rls.org or at 512-366-9109.