STATIN SURVEY ABOUT ASSOCIATION WITH ALS AND PARKINSON'S

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STATIN SURVEY ABOUT ASSOCIATION WITH ALS AND PARKINSON'S

Postby eml256 » Fri Jul 20, 2007 6:11 pm

(duplicate posting on "statin forum)

A GROUP KNOWN AS "PATIENTS LIKE ME" IS CONDUCTING A SURVEY TO DETERMINE IS THERE EXISTS AN ASSOCIATION STATISTICALLY BTN STATIN USE AND PARKINSON'S OR ALS.

*http://www.patientslikeme.com/forum/show/1596

If you are interested in helping alerting all others to the potential dire, neurological side effects of statins, please consider joining this group if for no other reason than to take their survey. the group was started by 3 MIT engineers--2 of them brothers of stephen Heywood who succumbed to ALS at a very early age. they are determined to help find the cause and cure...

The cholesterol-lowering drugs known as "statins" are among the most widely prescribed drugs in the world. They are an established front line treatment in the prevention of stroke and heart disease and have been used safely by millions of people. We are asking all of our members to complete a brief survey about their use of statins (all patients and caregivers will receive a separate invitation to the survey). This information will allow the PatientsLikeMe communities to provide an important missing link, the patient's voice, in a growing discussion about how statins may relate to neurodegenerative diseases.

Statins have been suggested as a possible treatment for MS (*http://www.medicalnews...(cropped))

and in Parkinson's Disease, researchers have found that that the disease's incidence is lower in people taking statins

(*http://www.medicalnews...(cropped)); paradoxically however, they also find lower LDL-cholesterol can be a risk factor for PD.

We are responding in part to interest from our users in a number of recent research findings, including some forum postings pointing to concerns that the use of statins may trigger ALS. Last week the Wall Street Journal interviewed a scientist at the World Health Organization (Dr. Ralph Edwards, WHO Collaborating Centre for International Drug Monitoring) who recently published a report in the journal Drug Safety indicating a small number of reports of ALS or "ALS-like syndrome" associated with statin use. (*http://www.medicalnews...(cropped))

The information analyzed in the study comes from an international effort to compile information on adverse events - ranging from allergies to disability to death. The information system is not designed to monitor all drug effects, and so, it only contains limited information about people who may have been harmed by drugs. This is important data, but the WHO methods and research findings are controversial and will receive a lot scrutiny.

There is a great opportunity for the PatientsLikeMe community to contribute information that no one else has or can easily generate. That contribution will have the maximum benefit if you would be willing to respond to a brief survey about whether you are using or have ever used statins, and answering a few other questions that are not collected as part of our standard treatment reports. You will be providing important information that may help shape future research on the relationship between statin use and your disease. If you have never used statins, it is still very important that you complete the few questions in the survey that are applicable to you.

We will summarize and report the results to the PatientsLikeMe community and the public, in the interest of increasing the amount and quality of information that is available to evaluate the benefits and risks of these drugs. Based on the initial results, we may also conduct more detailed surveys on this topic.

As always, if you have any questions please be sure to message one of the research team, or email *research@patientslikeme.co
eml256
 
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Joined: Sat Oct 15, 2005 10:08 pm

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