RLS Patient Odyssey Survey II – Frequently Asked Questions

October 2, 2020 About the Survey Why should I take the RLS Patient Odyssey Survey II ? – Data collected in the Patient Odyssey Su...

October 2, 2020

About the Survey

Why should I take the RLS Patient Odyssey Survey II? – Data collected in the Patient Odyssey Survey II will offer researchers information on the long-term burden of disease, leading to improved medical treatments and improved quality of life. Your input matters! “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.” -Karla Dzienkowski, Executive Director, RLS Foundation.

Who can take the survey? – The Patient Odyssey Survey II is open to anyone with RLS worldwide, with a separate survey open to partners or caregivers living in the same household.

Where can I find the survey links? – The patient and partner survey can be found on our website at: www.rls.org/odyssey. Or you can access the surveys directly on the survey platform website (see below).

How long will it take to complete? – The patient survey should take approximately 60 minutes to complete, and the partner/companion survey will take about 20 minutes to complete. However, you do NOT have to complete the survey in one sitting; the deadline to submit responses is Friday, October 23, at midnight.

Can I request a paper copy? – Absolutely! Contact us, and we can send you a printed survey with a return envelope. We can only mail to US addresses. Email maddie@rls.org to request a copy and be sure to include your name and mailing address. Be sure to mail your survey back to us by Friday, October 23.

How will the results be shared? – 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 through the RLS Foundation's Advocacy Initiative. It is important to note that protecting your privacy is of utmost importance to us.

Will my responses be confidential? – Your responses will remain confidential and anonymous. No individual identifying information is requested of or collected from survey participants.

Completing the Survey

What if I need a break while I’m taking the survey? Can I save my work and come back to it? – No problem! We recognize that the survey is long. The questions are designed to cover all aspects of living with RLS. You do NOT have to complete the survey in one sitting; you can close your browser and return using the same device to www.rls.org/odyssey to pick back up exactly where you left off. Just be sure to complete and submit the survey by midnight on Friday, October 23!

What do I need to do to make sure I submit the complete survey correctly? – After the final survey question you will be routed to an exit page thanking you for your participation. To ensure that your responses are recorded, make sure you click DONE at the bottom of this page; you will receive a “Success Page” to confirm that your responses have been received.

What if I don’t want to answer a question? – We understand that some questions may be difficult or uncomfortable to answer. You may choose to leave any questions blank you don’t wish to answer.

Is there a way to make the survey font size larger? – To zoom in on your computer screen, press the "Control +" keys on your keyboard (or "Command +" if you are using a Mac). You can also try adjusting the brightness of your computer and/or iPad screen. If you would prefer, we can mail a printed survey to your US address with a return envelope. Email maddie@rls.org to request a copy and be sure to include your name and mailing address.

What if I don’t find the right answer for me in the list of options for a multiple-choice question? – The RLS Patient Odyssey Survey II was written by medical professionals on our Scientific & Medical Advisory Board and includes questions from existing RLS validated questionnaires. One of the requirements when using validated questionnaires is that the questions must be presented exactly as written, with no changes to the original questionnaire. Just try to answer the question to the best of your ability, i.e., what is most reflective or representative of your RLS experience.

How do I enter dosages (invalid answer)? – Questions that ask for dosages require a numerical value only. Do not use letters (such as mg for milligrams). If you are instructed to take your medication several times per day, please provide the total dosage. For example, if your prescription states: gabapentin 600 mg TID PO, which translates to 600 mg three times daily per mouth, you would enter the number 1800. If a medication is used across multiple days, you can provide an average. If you are unsure you may email maddie@rls.org for assistance.

What should I do if I encounter technical difficulties? – Unfortunately, technical difficulties do happen. If this happens to you, you can contact us for a printed survey (see above), or take the survey directly on the Survey Monkey website (the survey development platform) here:



Who can I contact with questions? – For all other questions, comments and concerns, please email maddie@rls.org or call (512) 366-9109. Your input is very valuable to us!

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