20th Annual Sleep and Health Benefit

One-Year Longitudinal Data from the National Restless Legs Syndrome Opioid Registry

Benjamin Wipper, BA

Massachusetts General Hospital

If the PDF viewer does not appear initially, please reload the page to refresh your browser. 

Clinical Implications
In this population of patients with refractory Restless Legs Syndrome (RLS), opioids are generally used at low doses with good efficacy. Approximately half of all participants use methadone to treat RLS, and nearly a quarter use oxycodone. At one-year follow-up, sleep quality and RLS symptom control were similar to baseline, and the vast majority of participants did not increase opioid dose. Of the participants that increased dose, over half increased by a small amount. Larger dose increases were accounted for by predictable factors. Longitudinal data collected in the coming years will continue to grow knowledge on the safety and tolerability of opioids for RLS and may help in determining potential high-risk groups.
Research Narrative

Restless Legs Syndrome (RLS) is a sensory-motor neurological disorder characterized by an irresistible urge to move the legs. Although dopamine agonists and alpha-2-delta calcium channel ligands are effective treatments for this disorder, low dose opioid medications are prescribed for patients with treatment-refractory RLS. The RLS National Opioid Registry is a longitudinal observational study that will provide important information about long-term symptom control, dose escalation and complications in patients using prescribed opioids for RLS. Baseline interviews and recurring 6-month surveys on REDCap collect data on opioid type and dose, side effects, psychiatric symptoms and RLS severity.

At baseline assessment of the 500 enrolled participants, nearly half were taking methadone, and roughly one-quarter were taking oxycodone formulations. The prescribed opioids were generally used at low doses with good efficacy. At 1-year follow-up, 98% remained enrolled and the majority remained on the same opioid dose. Just under a third of participants increased opioid dose, and about 15 percent decreased their dose. Larger dose increases were associated with a number of predictable factors: use of opioid medications for pain in addition to RLS, discontinuation of other RLS medications since baseline assessment, and under 1 year of opioid use at baseline. Continued longitudinal data will grow knowledge on treatment efficacy and tolerability of opioids for RLS which will better inform clinical decisions.

Research Category
Explore Other Posters

10:00 – 11:30 AM ET
HMS DSM Annual Faculty Meeting

10:00 – 11:30 AM ET
Mary A. Carskadon, PhD Introductory Meeting with HMS DSM Trainees

12:00 – 1:15 PM ET
Division of Sleep Medicine Annual Prize Lecture by Mary A. Carskadon, PhD

1:15 – 1:30 PM ET
Awarding of 2020 Harvard Medical School Division of Sleep Medicine Prize to Mary A. Carskadon, PhD

3:00 – 4:30 PM ET
Poster Session

4:30 – 5:30 PM ET

6:00 – 7:00 PM ET
Evening Public Lecture by Mary A. Carskadon, PhD

“Changes in Sleep Biology Create a Perfect Storm Affecting Teen Health and Well-Being”