Restless Legs Syndrome Foundation Blog

February 1, 2019

By Kris Schanilec

The RLS Foundation has awarded a $22,100 grant to John Winkelman, MD, PhD, of Harvard Medical School and Massachusetts General Hospital to continue his study on the long-term use of opioids to treat RLS. Dr. Winkelman received a grant from the Foundation in 2017 to support the first stage of this research.

“The funding extension will help the researchers obtain valuable information from long-term follow-up of patients,” says Karla Dzienkowski, executive director of the Foundation. “This is the first study in which patients with RLS who use opioids are monitored over time to evaluate the effectiveness and tolerability of this treatment long-term, and by far the largest observational study of such patients.”

Opioids are an established, highly effective treatment option for people with severe RLS when other therapies have failed. However, concrete data is lacking on long-term use of these medications for RLS. By gathering data over time, Dr. Winkelman’s team will evaluate the effectiveness, tolerability and safety of opioids for treating RLS, and aim to further understand how factors such as behavior and mood may influence opioid effectiveness and safety.

This much-needed data will help physicians and patients make more informed treatment decisions, especially in the face of increasingly strict opioid regulations limiting access at the state and federal levels.

Over the past year, Dr. Winkelman’s team has created a national registry of patients who take opioid medications for RLS. As of December, the researchers had enrolled 360 participants – far surpassing their goal of 200. Participants complete a phone interview and an online survey covering a range of topics related to their RLS symptoms, treatment, medical history, habits and behaviors. They then complete follow-up surveys every six months. All stored information is confidential and anonymous.

The study will remain open to new participants until approximately late June. Enrollment is limited to individuals who have a diagnosis of RLS, are taking an opioid medication to treat their RLS symptoms, and have previously taken or are currently taking a dopamine agonist for RLS treatment. For information about participating, see rls.org.

Please note that no consultation, advice about clinical care, or medication is provided through this study.