Restless Legs Syndrome Foundation Blog

August 15, 2025

RLS Foundation Certifies University of Southern California as a QCC

As an RLS Quality Care Center, the University of Southern California is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Southern California (USC) as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, USC will serve as a destination for RLS patients who need expert medical care.

“We are honored to receive designation as a Quality Care Center,” says Tammy Wong, MD, interim medical director of the Quality Care Center at USC. “As an RLS Quality Care Center, we aim to enhance our patients' quality of life by controlling RLS symptoms, improving sleep quality and providing RLS education to patients, families and the community,” says Dr. Denise Sharon, clinical assistant professor at USC and RLS Foundation Scientific and Medical Advisory Board member who has been caring for RLS patients for over 25 years.

USC joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome USC to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face significant challenges in symptom management. Access to highly skilled and experienced healthcare providers is essential to effective treatment and improvement in quality of life.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers with expertise in RLS management. We look forward to partnership with USC to advance the quality of care for RLS patients.”

The contact information for USC is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• Barrow Neurological Institute

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

August 15, 2025

RLS Foundation Certifies Barrow Neurological Institute as a QCC

As an RLS Quality Care Center, Barrow Neurological Institute is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified Barrow Neurological Institute as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, Barrow will serve as a destination for RLS patients who need expert medical care.

“We are proud to be recognized with this esteemed designation,” says Nicki Niemann, MD, director of the Quality Care Center at Barrow. “We’re honored to be recognized as an RLS Quality Care Center and excited to bring national attention to the critical needs of this patient population. By uniting Barrow’s expertise in sleep medicine and movement disorders, we’re uniquely positioned to provide innovative, patient-centered care for even the most complex RLS cases. Through this partnership with the RLS Foundation, we hope to advance clinical standards, expand access to expert care in the Southwest and inspire a new level of understanding for a condition that is too often overlooked,” says Dr. Neimann.

Barrow joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are delighted to welcome Barrow to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “Individuals with RLS in the Southwestern part of the United States face significant challenges in finding healthcare providers who can manage moderate to severe forms of RLS. Barrow Neurological Institute provides access to knowledgeable and skilled healthcare providers who can provide personalized treatment plans to improve quality of life for those living with RLS.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers proficient in RLS management. We look forward to our partnership with Barrow Neurological Institute to provide treatment access, management and quality of life improvement for RLS patients.”

Contact information for Barrow Neurological Institute is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• University of Southern California

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

Clinical Insights Into Observational Studies

By Dr. William Ondo, Director of the RLS Quality Care Center at Houston Methodist Neurological Institute

Medical epidemiological studies, also called observational studies, assess information from existing data sources. These studies often make news headlines, reporting “associations” between some factor (e.g., medicine, food, activity) and some outcome (typically a feared medical condition). No epidemiology/observational study can ever deduce that one factor “caused” the other, a distinction that is often blurred by media sources. A classic example: there is an extremely high association between ice cream consumption and deaths by drowning. However, it is unlikely that ice cream consumption causes death by drowning and unlikely that death by drowning causes more ice cream consumption. It is much more likely that both occur more in summer, which explains the association. Although a useful, fast, and inexpensive mode of study has heralded many medical advances, in isolation, retrospective epidemiology studies are among the least scientific and potentially misleading forms of analysis.

One recent observational study correlated the use of gabapentin with developing dementia.¹ This study incorporated many of the statistical strategies used to improve the accuracy of observational studies. However, even the most strenuous and well-meaning analysis can’t overcome the potential for bias in any retrospective (analyzing previously collected data) study. This specific study compared 26,416 patients who used gabapentin for low back pain against 1,103,678 patients who did not take gabapentin for low back pain. All diagnoses were based on recorded standardized electrical diagnosis codes. The researchers from this study then used a complex process to make the larger non-gabapentin group more similar to the gabapentin group by specifically selecting a subset of 26,000 individuals from the non-gabapentin group to use in the direct comparison. By doing this, the researchers can “correct” for some intrinsic differences to make the comparison relatively more fair. Patients with other established risk factors for dementia that might bias the group (independent of gabapentin use) were excluded. At the end of this correction, the two groups were similar for age, sex, race, hypertension, diabetes, heart disease and some other disorders that have been associated with developing dementia, based on electronic medical record data.¹

However, researchers can’t correct for every factor. Fortunately, the authors of this study included the baseline characteristics of the 26,000 gabapentin group vs. the 1.1 million non-gabapentin group. Overall, the gabapentin group was much “sicker,” older, and had many additional factors that would otherwise increase their risk for dementia. Although the researchers corrected for some of these, they could not correct for many other potential dementia risk factors, such as hearing loss, social isolation, obesity, physical activity/exercise, and general attitudes toward health/healthy lifestyles. The published results do not allow us to determine whether the gabapentin group had more of the unmeasured dementia risk factors. However, because they had higher risks across almost every other reported baseline characteristic, it is reasonable to infer that they likely had more of these unmeasured risk factors as well. It was also indicated that the gabapentin baseline group were prescribed a greater number of opioids and other pain treatments. Based on this information, the gabapentin baseline group likely had more severe pain issues, which would at least suggest less exercise and more social isolation.

Potentially the biggest uncorrected risk factor for these types of observational studies is the frequency of health care visits. The more a person seeks medical assistance, the more likely they are to receive treatment and obtain a diagnosis for medical conditions. No individual who has not seen a physician is diagnosed with dementia and patients who visit a physician less often are also less likely to receive a subsequent diagnosis of dementia. This is a major, although underrecognized, intrinsic bias with all observational studies.

Other issues that may account for bias include the accuracy of the medical records, since no patient was interviewed or completed any type of questionnaire for this study. Further, generalizations to one disease (back pain) cannot always be attributed to another (RLS). For example, alpha-2-delta ligand medications (gabapentin, gabapentin enacarbil and pregabalin) improve sleep in RLS, which is known to lessen dementia risk in general. Specifically, they increase deep (delta) sleep, which is also hypothesized to reduce dementia.

Unfortunately, proper scientific studies to prove causality require prospective (collecting data moving forward in time) trials, which are lengthy, expensive and very challenging. With respect to this study, proving an association between gabapentin and dementia would require randomizing thousands of similar people to take either gabapentin or a placebo, with no chance of taking similar medicines. Participants are followed regularly for 10-15 years, examining how many in each group develop dementia. That idealized version of the study is essentially impossible on practical, financial and ethical grounds. There are high quality, but short (12-48 week) randomized prospective trials demonstrating the benefit of gabapentin enacarbil and pregabalin for RLS, however these can’t definitively eliminate the possibility of side effects that occur only after many years. Interestingly, there have been only a few small studies of gabapentin for RLS, but because of its low cost, long-established safety profile, and similarity to gabapentin enacarbil and pregabalin, it is commonly used.

At this point, I do not feel this association study of gabapentin with dementia should deter people from using gabapentin for RLS. We consider this medicine to be among the safest overall options for RLS.

1. Eghrari NB, Yazji IH, Yavari B, Van Acker GM, Kim CH. Risk of dementia following gabapentin prescription in chronic low back pain patients. Reg Anesth Pain Med. Published online July 10, 2025. doi:10.1136/rapm-2025-106577

RLS Foundation and American Academy of Sleep Medicine Foundation Announce 2025 Research Grant Awardees

August 4, 2025

Join the RLS Foundation Board of Directors

Shape the future of RLS advocacy and research

The RLS Foundation is seeking passionate, committed individuals to join our Board of Directors. Board members have the unique opportunity to guide the strategic direction of the Foundation, support its mission and directly contribute to improving the lives of individuals living with RLS.

Board members play an essential role in governance, advocacy, fundraising and outreach. The Foundation relies on its board to provide thoughtful leadership, expand our outreach and ensure we remain a trusted voice for the patient and medical community. We welcome applicants who bring clinical expertise, lived experience with RLS, nonprofit leadership, or who have a background in business, law, finance or communications. Many of our Board members have been diagnosed with RLS or are RLS physicians, however this is not a requirement.

Board service is both a responsibility and a privilege. In addition to participating in board meetings (virtual and in-person), members are expected to serve on at least one committee and actively support the Foundation’s programs and goals. This includes contributing time and resources and acting as an ambassador for the Foundation within your professional and personal networks.

Serving on the RLS Foundation board is a meaningful way to give back and to join a dedicated team working to advance understanding, improve care, and ultimately find a cure for RLS. If you are interested in learning more about board membership, please contact info@rls.org for more information.

2025 Hill Day FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, October 6. 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, October 6, 2025*

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/hillday. 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!

Welcoming the RLS Foundation's New Board Chair

The RLS Foundation is pleased to announce that Jeffrey Durmer, MD, PhD, has been elected chair of the Foundation’s Board of Directors. Dr. Durmer joined the Board in 2019 after serving nearly 10 years on the RLS Foundation Scientific and Medical Advisory Board. He is a systems neuroscientist, neurologist and sleep medicine physician with expertise in technology-enabled sleep-health delivery systems. He is the chief medical officer of Absolute Rest, where he oversees the development of innovative technology-enabled precision medical and behavioral programs designed to enhance human health, longevity and performance. He is also the telemedicine principal investigator for the Sleep SMART clinical trial, the largest sleep apnea and stroke study funded by the National Institutes of Health (NIH). His past research spans from uncovering the neuroanatomical and neurophysiological substrates of subcortical visual systems involved in blind sight, to developing the first standardized clinical interview tool for pediatric restless legs syndrome.

Q: Thank you for giving us the opportunity to introduce you as the Board Chair of the RLS Foundation! How did you become involved with the Foundation?

I first became involved with the RLS Foundation as a researcher at Emory University. At the time, I was directing the Emory Pediatric Center and the adult sleep laboratory, working to identify various RLS phenotypes with Emory’s Clinical Research in Neurology (CRIN) Program and collaborating with the Decode Project in Iceland.

I was working with Dr. David Rye and Dr. Don Bliwise, who introduced me to the RLS Foundation’s Research Grant Program, which has funded over $2 million in research to date. I thought it could be a great opportunity to fund research characterizing the phenotypes of children with RLS and further understand the relationship between RLS and ADHD. I submitted an application and became an RLS Foundation Research Grant recipient in 2005. During that period, I had a research poster featured at the annual American Academy of Sleep Medicine meeting, where I met Karla Dzienkowski, who is now the RLS Foundation executive director. Karla’s interest in pediatric RLS research led to multiple discussions, and she persuaded me to join the Foundation’s Scientific Medical Advisory Board (SMAB). I worked on the SMAB for eight years, helping support the Foundation’s work in pediatrics.

Q: In October 2024, you became the new Board chair. What are some of your responsibilities in this role?

The RLS Foundation is a dynamic and fluid organization, responsive to the needs of people with RLS. We are an advocacy organization, first and foremost, which includes funding pilot projects to advance research into multiple aspects of RLS, providing education and support programs for patients and families, representing the interests of patients, researchers and clinicians, and helping governmental agencies from the NIH to Congress understand the importance of addressing this very common condition and its associated medical comorbidities. As chair, my role is to create clarity and ensure our actions are reflective of our values and mission. My goals for the Foundation are to help it embrace technological and organizational innovation to grow our audiences, refine our financial efficiencies, and improve connectivity between RLS researchers, clinicians, patients and their families.

As someone with extensive experience managing businesses, clinical laboratories and healthcare operations, I look forward to guiding the Board toward a sustainable structure that supports continued growth throughout and after my term.

Q: Do you believe that your previous work on the SMAB complemented your role on the Board?

Absolutely. In addition to understanding the work of the Board of Directors, I understand the pressures the researchers and clinicians on our SMAB face – both in their practice and on behalf of the organization. I believe there needs to be a transparent and dynamic relationship between the SMAB and Board of Directors to foster collaboration and sustained proactive organizational growth in the future.

I also want to identify how the Board can assist Karla and the Foundation in their work with the SMAB. The more proactive we become, the less reactive we will need to be within the Foundation when issues arise.

Q: What led to a specific interest in RLS?

I was recruited from the University of Pennsylvania to the Department of Neurology at Emory University. My previous work focused on the consequences of sleep deprivation, the individual variability of the impact of sleep disorders on health and function, and the neuroanatomical structures involved in normal and pathological sleep.

When I got to Emory, I found that the team was more focused on movement disorders, so I made a decision to learn more about the basic science and the animal modeling associated with RLS. I found a clinical “missing link” within pediatric RLS. While there were publications and some research being conducted, there was no standardized way to diagnose and treat RLS in pediatric populations. I decided to switch my focus from cognition and the neurocognitive consequences of sleep deprivation and performance to RLS in children.

Q. What is your advice for those struggling with RLS?

Know that you are not alone. Your symptoms are shared by millions of other people. By joining the RLS Foundation, you will find a community of people going through similar experiences who can provide hope.

Membership to the Foundation not only connects you with a support network, but also keeps you informed on the latest RLS research and news. As we know, being part of a community promotes mental and physical health, and when that community is focused not only on connectivity but also creating solutions to a major health issue, it serves you, your family and the rest of humankind.

The full interview with Dr. Durmer is available in the Winter 2025 edition of NightWalkers, our quarterly magazine. You can access the complete article by logging into the member portal of the RLS Foundation website. If you are not yet a member, we invite you to become one today by visiting www.rls.org/joinnow.