MS Research Roundup: May 20, 2014
Pregnancy Hormone May Augment MS Treatment; Happy International Clinical Trials Day; Online Comment Provokes Evidence Milestone; Hanging Ten With Floppy Feet
MS Research Roundup collects items of interest to multiple sclerosis researchers from around the Web. Send us your tips: tips@msdiscovery.org.
Pregnancy Hormone Shows Promise
In women with MS, pregnancy tends to protect against relapses, but symptoms worsen again after giving birth. The pregnancy hormone estriol showed promise in combination with the popular drug glatiramer acetate (Copaxone/Teva Neuroscience) in a phase 2 trial of 164 women with relapsing-remitting MS. Rhonda Voskuhl, M.D., director of the University of California, Los Angeles, MS Program, presented the preliminary findings last month at the American Academy of Neurology Meeting 2014 in Philadelphia, PA. The effects of estriol seemed to peak at 1 year with 47% fewer flare-ups in women taking both the drug and hormone and fade by 2 years compared to the control group on glatiramer acetate and placebo tablets. Voskuhl said that the women who were given the hormone also scored higher in cognitive tests. It’s too early to know whether estriol will be a safe and effective therapy. "We need to wait until a validation trial has been done for efficacy, and then women must weigh the risk/benefit ratio with their personal physician," she told Medscape Medical News. (American Association of Neurology, Medscape Medical News, New Scientist)
Celebrating Clinical Research
Avast, ye mateys. Hoist yer colors for evidence-based medicine. No, it’s not International Talk Like a Pirate Day, it’s International Clinical Trials Day, commemorating the 1747 launch of perhaps the first controlled trial. Scottish navy surgeon James Lind’s study benefited sailors everywhere by showing that oranges and lemons dramatically outperformed other supposed cures for scurvy. In preparation, Lind may have also performed the first systematic review. One goal for International Clinical Trials Day is to reach 100,000 supporters for the AllTrials petition for greater transparency and access to data. The AllTrials campaign started in the U.K. and has a U.S. presence as well. (AllTrials, The Cochrane Collaboration, The James Lind Alliance, The James Lind Library) (Tip from Rochelle Sharp)
Online Comment Triggers Transparency
It’s not every day that a single online comment triggers a landmark event in evidence-based medicine. Underneath a 2008 review of flu-fighting neuraminidase inhibitors on the Cochrane website, Japanese pediatrician Keiji Hayashi noted that the positive conclusion about the effectiveness of the antiviral oseltamivir (Tamiflu/Roche) came from an industry-funded summary of 10 trials, only two of which had been published. To head off a 2009 flu pandemic, the U.S., U.K., and other governments had stockpiled more than $1 billion of the antiretroviral drug, based on published findings that it worked. The Cochrane team and the British Medical Journal waged a 5-year campaign to access the full, unpublished clinical trial data from Roche. The resulting updated Cochrane review concluded that Tamiflu doesn’t really work that well. That’s one success story in a sea of secrecy. Clinical trial data for approved treatments are routinely withheld from doctors and researchers. “This is a pivotal moment in the history of medicine,” wrote physician Ben Goldacre, MBBS, a co-organizer of the AllTrials campaign to require all clinical trials to be registered and their results reported. “We cannot make informed decisions about which treatment is best while information about clinical trials is routinely and legally withheld from doctors, researchers, and patients. Anyone who stands in the way of transparency is exposing patients to avoidable harm.” He added, “We need to praise, encourage, and support the companies and individuals who are beginning to do the right thing. This now includes Roche.” (The Cochrane Collaboration, The Guardian, The Lancet, Nature News)
Hang Ten
“Stupid feet.” Catching a wave and walking to the nose of a surfboard to dangle all 10 piggies off the tip takes timing, balance, and confidence—all of which Rhode Island journalist Erik Hedegaard has in short supply. There’s a fair chance a wheelchair looms in his future and an almost zero percent chance he’ll be surfing in 10 years. In the June 2014 issue of Outside magazine, he tells the story of how he turns to one of the best nose riders of the modern era for a last-chance grasp at his hang-ten dream. His relentlessly cheerful coach is Robert Weaver, nicknamed Wingnut, a California surfer who starred in the 1994 movie Endless Summer 2 and who also has a demyelinating disease. “In Wingnut’s case, it’s multiple sclerosis (MS), which was first diagnosed in 1997, went into remission five years later, and hasn’t come back since,” Hedegaard writes. “Mine is something called chronic inflammatory demyelinating polyneuropathy (CIDP), and it’s been having a field day with me for at least the past ten years, turning my immune cells against me and destroying the protective covering—the myelin sheath—that surrounds the nerve fibers in my legs and feet. As a result, many of those nerves are now dead, leaving me with calf muscles that are atrophied and as thin as cornstalks, toes that won’t wiggle, and feet that are so insensible they sometimes flop around of their own accord. I have scars on my knees from the times I’ve fallen.” CIDP is a relatively rare disease, afflicting about 9 people per 100,000, while MS afflicts 30 per 100,000. (Outside)
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