Opioid Study Still Seeking Participants

Lewis Phelps is current chair of the RLS Foundation Board of Directors. He is a strategic public relations consultant with Sitrick And Company, a Los Angeles-based firm that specializes in handling crisis situations. Previously, Phelps was head of the public relations function for the nation’s second largest electric utility and for two major U.S. rail transportation companies. Early in his career he was a staff reporter for the Wall Street Journal for 10 years.

Phelps has extensive non-profit board experience in addition to a prior six-year term on the RLS Foundation board. He has chaired United Way campaigns in two cities, co-founded an anti-litter organization in Roanoke, Virginia, was on the board and executive committee of the California Science Center for 15 years, and has served as chair of the board of Pasadena Heritage, one of the nation’s leading local historic preservation organizations.

I encourage members of the RLS community to participate in the National RLS Opioid Registry, an important new study that has been funded by the RLS Foundation and is being conducted by John Weyl Winkelman, MD, PhD, and Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital. He is an internationally leading RLS researcher and long-standing member of the Foundation’s Scientific and Medical Advisory Board.

The study seeks to track up to 200 RLS patients who are currently being treated with an opioid medication, and who formerly were treated with a dopamine enhancing drug such as Mirapex or Requip. As of early March 2018, the study is more than halfway toward its enrollment goal.

There’s no monetary payment for participants, but the psychic rewards are large. By joining the study, you can help to significantly increase the body of scientific information that is available on the effectiveness of low dose opioids to treat RLS and the potential side effects. You can also learn how your personal experience with opioids compares with other RLS patients.

While some solid scientific studies address these questions, the Mass General study will expand our knowledge about the efficacy and safety of opioids to treat RLS. Such information will be valuable in coming months and years as the RLS Foundation grapples with the challenges that RLS patients are facing due to growing restrictions on use of opioids.

Addiction is obviously a huge and growing problem in the US. However, available clinical data suggest that using low doses of opioids to treat RLS will not contribute meaningfully to the addiction epidemic.

I can speak from personal experience in saying that participation in the RLS Registry is not difficult, time consuming, or unpleasant; I have become one of the study’s subjects. When you enroll, a researcher will conduct a 45-minute telephone interview with you, at a convenient time. They will ask about your current and former medications used to treat RLS, and your experience with them. The researcher who conducts the interviews is courteous, professional, and pleasant.

Following the initial interview, you will be asked to complete an online survey that takes about 20 minutes, and then you will be asked to complete a similar online survey every six months for up to five years. Your answers to the questions are completely confidential, and all information is kept on a secure hospital database that is only accessible by Dr. Winkelman and his research coordinator.

Each year of the study, you will receive a personal report about the overall results of the study to date, as well as a comparison of your own experience with opioids compared with the study group overall. For example, you will be informed whether your RLS symptoms are controlled better, worse, or about the same as the study group overall.

If you have RLS and are currently being treated with opioids, please do yourself and everyone else who has RLS a favor by joining the study. To do so, simply send an email to rlsregistry@partners.org, in which you identify yourself, provide contact information (email and phone number) and indicate that you wish to volunteer as a study subject.

Thanks,

Lew Phelps, Chair of the RLS Foundation Board of Directors