Opioid Study at Massachussets General

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Rustsmith
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Opioid Study at Massachussets General

Post by Rustsmith »

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/.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Opioid Study at Massachussets General

Post by ViewsAskew »

Great news, isn't it????
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Opioid Study at Massachussets General

Post by Rustsmith »

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Opioid Study at Massachussets General

Post by ViewsAskew »

Exactly.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Opioid Study at Massachussets General

Post by ViewsAskew »

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.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Opioid Study at Massachussets General

Post by Polar Bear »

Well done Ann.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Opioid Study at Massachussets General

Post by badnights »

They are accepting Canadians into the study, because of the unexpectedly strong response from Canada. I will have my interview in early January.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

lhoff12085
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Location: Sarasota, FL

Re: Opioid Study at Massachussets General

Post by lhoff12085 »

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

badnights
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Re: Opioid Study at Massachussets General

Post by badnights »

Congratulations! If it's Julia who interviews you, she's really nice.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Joanie60
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Re: Opioid Study at Massachussets General

Post by Joanie60 »

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

Rustsmith
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Re: Opioid Study at Massachussets General

Post by Rustsmith »

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Posts: 4668
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Opioid Study at Massachussets General

Post by Rustsmith »

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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