Restless Legs Syndrome Foundation Blog

January 28, 2026

Commonly Used Rating Scales in RLS Research

Research related to RLS often relies on questionnaires and rating scales to provide objective clinical data. These tools provide a baseline to help researchers and clinicians assess clinical diagnoses and evaluate symptom severity, treatment effectiveness and patients' physical and emotional well-being. Understanding these scales can make it easier to interpret published research findings and clinical results.

International RLS Study Group Score (IRLS)

The International Restless Legs Study Group (IRLSSG) developed and validated a 10-item rating scale to indicate how symptoms have affected a patient over the course of one week. This test is administered by a physician, but answers are self-reported by the patient. Each of the 10 questions asks the respondent to rate their experiences with RLS on a scale from 0 (no symptoms) to 4 (severe and frequent symptoms), producing a total score between 0 and 40. Generally, scores in the range of 1–10 correspond to mild RLS, 11–20 to moderate, 21–30 to severe, and 31–40 to very severe RLS.

How is it used? The IRLS is a commonly administered questionnaire used in research and clinical practice to rate the severity of RLS symptoms and can be used to help determine the best course of treatment for RLS patients.

RLS-6 Scale

The RLS-6 scale measures the impact of RLS on daily life. This 6-item questionnaire evaluates questions on a scale from 0 to 10, with higher numbers indicating more severe RLS. The questions ask for individuals to rate satisfaction with sleep and severity of symptoms while falling asleep, during the night, during the day while sitting or lying, and during the day when moving around.

How is it used? The RLS-6 is an instrument to assess RLS severity within specific and pragmatic parameters. It can be used to supplement the IRLS.

Cambridge-Hopkins Diagnostic Questionnaire (CH-RLSq)

This questionnaire is a validated diagnostic tool used by physicians to assess and identify RLS. The questions address basic diagnostic features of RLS such as frequency and timing of symptoms, relief of symptoms with movement, and impact on daily life or sleep patterns.

How is it used? The CH-RLSq is commonly used in research to validate RLS diagnoses and differentiate RLS from conditions with similar characteristics.

Suggested Immobilization Test (SIT)

The SIT is a validated tool that assesses leg discomfort and leg movements during a 60-minute period. The test is administered in the evening in a clinical setting. Participants recline at a 45-degree angle with legs outstretched and are instructed to avoid voluntary movement for the duration of the test. The test records surface electromyograms from the anterior tibialis muscles to detect leg movements. A high number of leg movements during the test may help differentiate patients with RLS from those without RLS.

How is it used? The SIT provides a standardized testing condition to measure the severity of RLS symptoms by quantifying leg movements and subjective discomfort. This test is often used to determine whether potential treatments might be helpful to treat RLS symptoms.

Pittsburgh Sleep Quality Index (PSQI)

This validated questionnaire is administered by a physician and evaluates overall sleep quality over a one-month period. The questions fall into seven categories: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, and daytime dysfunction. Five additional questions rated by the respondent’s roommate or bed partner are included for clinical purposes but are not scored. Each question is scored from 0 to 3, with higher scores indicating greater sleep disturbances.

How is it used? The PSQI may be helpful during RLS research studies to determine the effectiveness of medications, interventions and other therapies for improving sleep.

The World Health Organization-5 Well-Being Index (WHO-5)

This questionnaire evaluates five statements to measure mental well-being over two weeks. Statements are rated on a 6-point scale, with higher scores indicating better mental health.

How is it used? The WHO-5 may be used in RLS research to study the relationship of RLS and mental health or to examine mental health outcomes based on treatment response.

January 8, 2026

Thankuary: A Month of Gratitude from the RLS Foundation

January is Thankuary - a campaign that emphasizes appreciation and gratitude following the busy holiday season. During Thankuary, we take time to recognize the incredible people who make our mission possible. Every step forward in awareness, education, advocacy and research happens because of a community that shows up with compassion, devotion and hope.

To our members, thank you for being the heart of our community and for trusting us with your stories, your voices, and your continued support.

To our volunteers and Board of Directors, we extend our deepest thanks to those who generously give their time, talents and leadership to support our work in so many ways.

To the healthcare professionals on our Scientific and Medical Advisory Board and Quality Care Center certified clinicians, we are thankful for your expertise and compassionate care for people living with RLS.

And to the RLS Foundation advocates and staff, we are profoundly grateful to your commitment to improving the lives of those living with this often-devastating condition.

Thankuary is a reminder that none of this work happens alone. Follow us on social media as we highlight our community throughout this month on Facebook and Instagram. Together, we are building a stronger, more informed, and more hopeful future for everyone affected by RLS. Thank you for being part of the RLS Foundation community.

Hill Day 2026 FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, March 23. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. This is an all day in-person event, coordinated with the Health and Medicine Counsel of DC (HMC), an organization that guides the Foundation's advocacy efforts. We'd love to have you join us on Capitol Hill! Read through the FAQ below, or please email adrianna@rls.org with additional questions or concerns.

Agenda: Monday, March 23, 2026*

8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC

8:45 AM: Walk to US Capitol Hill for group photo

9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC

9:30 – 12:00 PM: Senate Meetings

12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria

1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC

1:30 - 4:00 PM: House Meetings

4:00 PM: Debrief

*This schedule is tentative and may change based on office availability.

Preparation

What are we advocating for?

Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.

What should I bring with me?

A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.

What is the dress code?

Business casual attire is appropriate. Wear comfortable shoes as you will be walking/standing for most of the day.

The Restless Legs Syndrome Foundation is a nonpartisan organization. We are fortunate to have strong working relationships with both sides of the aisle that has resulted in continued advocacy success for our community. To maintain a nonpartisan and professional environment during our hill day, please refrain from wearing clothing or accessories with political slogans or affiliations.

What is the Health and Medicine Counsel (HMC)?

The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Will I receive training prior to meeting with representatives?

There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.

How can I prepare for Hill Day?

Step 1: Register at: www.rls.org/hill-day. Registering in advance allows our HMC representatives to target legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.

Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.

Step 4: Plan your travel including hotel reservations, car rentals, public transportation, or other necessary details.

What To Expect

This is my first time participating in any type of advocacy work- what should I expect?

Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Who do we meet with?

You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.

How is each meeting structured?

You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

What is my role in this meeting?

Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.

How much walking is required?

Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.

Travel

Where do we meet?

We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.

I am commuting by car. Where can I park?

The closest parking structure is Market Square Parking Garage located at 701/801 Pennsylvania Avenue NW. It is about a 20-minute walk to the meeting area. You can reserve parking tickets in advance.

Can I commute by train?

Yes, the HMC office is just a short walk from Union Station.

What hotels are in the area?

There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.

Options within walking distance:

- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)

- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)

- Kimpton George Hotel: 15 E St. NW (3 min walk)

Options within driving distance:

- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)

- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)

- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)

- State Plaza Hotel: 2117 E St NW (15 min drive)

- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)

You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!