ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 01-08-2008, 10:55 AM #1
lisag lisag is offline
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Default ALS Specialists Gather in Toronto

I don't know if I am posting this on the right section of the forum. But this was the MDA's official press release of their take of the 18th International Symposium, that was held l just last month, which I thought was interesting though various researchers may hold various opinions of the research findings. --Lisa
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ALS Specialists Gather in Toronto

Some 750 conferees, mostly clinical and scientific experts in amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), gathered in Toronto Dec. 1-3 for the 18th International Symposium on ALS/MND (Motor Neuron Disease), sponsored by the British Motor Neurone Disease Association.

Representing MDA were Sharon Hesterlee, vice president of Translational Research; Annie Kennedy, vice president of advocacy; and Margaret Wahl, medical and science editor.

Michael Strong, a professor of neurology at the University of Western Ontario, presented the increasingly compelling evidence that ALS is not one disease, but many.

The evidence includes the wide range of survival time; variability in the parts of the brain affected, including nonmotor areas in some people but not others; and the lack of a single genetic factor leading to ALS in a large percentage of patients.

The failure of mouse studies to predict human responses to experimental treatments may be due to the lack of uniform causation of ALS among human patients, compared to the uniformity of disease causation (usually, a mutation in the SOD1 gene) in the rodents.

ALS patients can now be segregated by whether their disease is familial or sporadic; by the site of onset of symptoms; and by rate of disease progression. However, these categories aren’t sufficient to reflect the wide variation in ALS or to select potential responders to different treatments.


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There was much discussion of how to improve drug selection and elimination of toxic compounds prior to conducting large, expensive and time-consuming trials. Results of several specific trials were presented.

Large-scale minocycline trial showed drug is harmful in ALS

Paul Gordon, until recently an assistant professor of neurology at Columbia Universiy in New York and a physician at the Eleanor and Lou Gehrig MDA/ALS Center at that institution, presented the results of a phase 3, 412-person trial of minocycline, a drug that had shown promise in ALS-affected rodents and in phase 1 and phase 2 studies in patients. (Gordon is now at the Hopital de la Pitie-Salpetriere in Paris.)

Minocycline is an antibiotic used to treat certain types of infections. It also has the ability to prevent a cell “suicide” program (apoptosis) and to dampen inflammation.

Participants at 31 U.S. centers were randomly assigned to either minocycline in escalating doses up to 400 milligrams per day, or to a placebo, for nine months, following a four-month lead-in phase during which patients’ untreated rate of decline in the ALS Functional Rating Scale (ALSFRS) was observed.

ALSFRS scores deteriorated 25 percent faster in the minocycline group than in the placebo group, although survival was the same in the two groups.

The rate of ALSFRS decline wasn’t dependent on the dose of minocycline, or on whether or not people were also taking riluzole (Rilutek).

Gordon said these disappointing results demonstrate the importance of clinical trials in ALS, as well as the need to improve the reliability of animal studies in predicting human responses to treatments, and the ability to use early-phase trials to select potentially beneficial compounds and eliminate useless or harmful ones.

Celecoxib and creatine combination may warrant further testing

Gordon also reported on a trial conducted at Columbia to compare two drug combinations against a historical control group (a similar group of ALS patients, previously observed and not treated with either combination).

Patients were randomly assigned to take either creatine plus minocycline or creatine plus celecoxib (Celebrex) for six months and were evaluated using the ALSFRS each month.

The investigators analyzed 60 people, two of whom died during the study and 58 of whom completed it. The average ALSFRS decline in the creatine plus celecoxib group was 5.27 units; in the creatine plus minocycline group, 6.47 units; and in the historical control group, 5.82 units.

The creatine-celecoxib combination was selected for further study.

TRO19622 was well tolerated, reached target blood levels

Jean-Louis Abitol, chief medical officer of Trophos, a pharmaceutical company in Marseille, France, presented evidence that the company’s experimental compound

TRO19622 was well tolerated in a one-month, 36-person study that compared riluzole plus one of three doses of the experimental drug with riluzole plus a placebo. Patients were randomly assigned to take TRO19622, a cholesterol-like compound designed to prevent cell death, or a placebo.

In the 250-milligram and 500-milligram dosage groups, target concentrations in the blood were reached.

The compound may warrant further study.

Ritonavir eliminated, but hydroxyurea may be worth closer look

Catherine Lomen-Hoerth, who directs an ALS center the University of California at San Francisco, reported on phase 1 trials of Ritonavir, a medication used for HIV/AIDS, and hydroxyurea. Ritonavir reduces levels of two compounds involved in cellular waste disposal that are elevated in ALS. Hydroxyurea, which is used to treat leukemia, may prevent astrocytes and microglia, two types of nervous-system support cells, from causing damage. Anecdotal reports from three people with ALS suggested possible benefit.

Participants were randomly assigned to receive either low-dose Ritonavir, high-dose Ritonavir, hydroxyurea or a placebo for six months, followed by an additional six months of observation.

After enrolling 24 patients, the investigators conducted an interim safety analysis. They found that participants in the high-dose Ritonavir group had a five-fold decline in forced vital capacity (a respiratory measure), a 19-fold decline in weight and a three-fold decline in strength. Their ALSFRS scores remained unchanged.

Declines in the low-dose Ritonavir group and the hydroxyurea group weren’t significantly different from those in the placebo group. However, measurements were somewhat worse in the low-dose Ritonavir group compared to the placebo group, while the hydroxyurea group did slightly better than the placebo group on tests of strength and on the ALSFRS, and their respiratory scores were better than the placebo group by a statistically significant amount.

Lomen-Hoerth said they’re considering a phase 2 study of hydroxyurea.

Dutch study warns against Chinese stem-cell treatments

Leonard Van Den Berg, a neurologist at University Medical Centre in Utrecht, Netherlands, reported on followup studies of patients who went to China for treatment with a type of stem cell found in human fetal nasal lining (olfactory ensheating cells, or OECs).

At Beijing West Hill Hospital and Rehabilitation Center, OECs are injected into the brains of ALS patients, at a cost of approximately $25,000.

A Dutch study followed 12 patients who went to Beijing. Seven reported they had very short-term improvement in functioning or an increase in strength immediately after the injections, lasting less than a day. Three saw no change, and two said they deteriorated.

ALSFRS scores, respiratory measurements and strength tests resumed the expected downward course in all cases. Of the 10 patients who later died, the median survival time was 2.9 years. One person developed a serious blood clot, and another developed pneumonia.

Van Den Berg recommended that people not seek stem-cell treatments in Beijing. He also reported that the West Hill center has since closed, because the Chinese government considered it too “mercantile.”

Strenuous lifestyle may increase ALS susceptibility

Agnes Gonzalez, a research nurse at an ALS center in Montpellier, France, described her team’s study, in which preliminary results suggest that consistent strenuous activity over decades may increase one’s risk of developing ALS.

When Gonzalez and her colleagues studied 51 ALS patients and 40 people with other neurologic diseases, matched with respect to age and gender, they found that those with ALS had expended significantly more energy in their daily lives over the course of three decades, starting at age 20.

Gonzalez said it appears that regular and intense daily activity is a more common way of life for people who develop ALS than for those who don’t. She said it wasn’t possible at this stage to determine why this may be so, but that decades of heavy work or other strenuous exercise could create a deficit of blood flow or oxygen in relation to nerve cells’ demands. She also emphasized that these results reflect an interim analysis and that a final analysis will include many more people with and without ALS.


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In addition to improving trial design, there was general agreement about the need for more convenient and precise measurements of disease progression and response to treatment in ALS.

Nose may provide window to brain

Jeffrey Rothstein, an MDA research grantee and director of the MDA/ALS Center at Johns Hopkins University in Baltimore, reported on a new technique involving biopsies of nasal tissue that may provide researchers with better information than they now have about how nerve cells respond to experimental treatments. Rothstein found cells that he believes are the same as nervous-system astrocytes in the nasal lining (olfactory epithelium) and says the new technique might be useful in testing drugs that modify astrocyte activity.

Portable device might make trials easier for participants

Edward Kasarskis, a professor of neurology at the University of Kentucky in Lexington and chief of neurology at that city’s Veterans Affairs Medical Center, presented his group’s study on the use of a lightweight, portable device called an accelerometer that’s designed to be used at home or in other locations to provide quantitative information about muscle movements.

Thirty-four people with ALS and 10 without the disease strapped Actical accelerometers to each limb and went about their daily activities.

Data from the devices were compared with muscle mass measurements, manual muscle testing measures and self-ratings of movements.

The investigators concluded that the accelerometers have the potential to be used as outcome measures in trials and could minimize participants’ travel and reduce dropout rates.


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http://www.als-mda.org/research/news...onto_conf.html

Last edited by lisag; 01-08-2008 at 11:23 AM.
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Old 01-08-2008, 11:24 AM #2
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