Restless Legs Syndrome (RLS) Discussion Board

Dr Winkelman at Massachusetts General Hospital has started a new observational study whose goal is to collect data about individuals with RLS who are using (or are planning to use) opioids to manage their RLS. The goal of this study is to be able to develop a position that can be used to counter the the current climate of increasingly strict regulation of these medications.

If you are interested in finding out more about what is involved, please check the study website at: http://www.massgeneral.org/rls-registry/.

Great news, isn't it????

It's a start. Of course the question is how long it will take to provide sufficient results. But without it, there is nothing to start the pendulum back in the other direction.

Exactly.

UPDATE: I contacted them, they me, and we had an intake interview last week. The study researcher - Julia, if I remember correctly - was very nice, steady, and handled the interview well. I realize it will take a LONG time to complete (5 years), but it gives me hope that one day we will look back at this and be grateful it is over.

Well done Ann.

They are accepting Canadians into the study, because of the unexpectedly strong response from Canada. I will have my interview in early January.

I'm having my interview on March 15th....

Congratulations! If it's Julia who interviews you, she's really nice.

I did the interview as well in December 2017, Looking forward to watching the progress of this study!

For members of this group who live in North America, take an opioid for your RLS and who have not yet joined the RLS Opioid Registry, time is running out. The Registry will stop taking new participants on Dec 31. Participation is very simple, send an email to RLSregistry@partners.org or call Julia Purks at (617)643-2082. You will get a call back where they will ask you questions about your RLS history. The call takes about 20 minutes and the questions are not difficult.

Participation by as many as we can get is VERY important. Information from the registry will be used to demonstrate to both the medical and regulatory community that opioids are an important part of treating RLS, especially for those of us who have been through augmentation and no longer have any other options.

The deadline to join the Opioid Registry at Massachusetts General Hospital has been extended to the end of June. If you haven't already joined, please do.