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 Symptom Management Trials
Hope is on the Horizon
*Clinical Research Programs Funded by the ALS Hope Foundation
NIPPV and Nutrition in ALS: This study is examining how to optimize both NIPPV (noninvasive positive pressure ventilation)
and nutrition evaluation for PEG placement in people living with ALS. The study is a large multi-center effort with the long-term goals of
determining the best time for each of these treatments to begin. The results will also tell us whether the effects of optimizing nutrition
and respiratory support are additive on survival and quality of life. Funded by NIH and supplemented by ALS Hope Foundation.
Work of Breathing in ALS: This study is examining how much energy is needed to perform the work of breathing. This will be done by measuring
how many calories are used while at rest, when placed on NIPPV, and when breathing against resistance. This will allow us to calculate the
differences in caloric needs and savings by ventilation. The information will be helpful in optimizing nutrition. This study is a collaboration
between the Neurology and Pulmonary departments at Drexel University College of Medicine and funded by the ALS Hope Foundation.
GI Motility in ALS: In collaboration with Dr. Michael Sherman, we are examining the speed at which food travels down the GI
tract using a technique to measure hydrogen production with a measured bolus of food. In many people living with ALS, constipation
is a major problem. This may be due to medications, or alternately, there may be involvement of nerve cells in the GI tract causing
slowing of the GI motility. The results will help direct the use of various medications that are frequently used as they can often
impact GI motility. Funded by the ALS Hope Foundation.
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Inflammation in ALS: This project is examining an enzyme, soluble phospholipase A2 (sPLA2), which is one of the first
mediators of the inflammatory reaction. We have found an increase in the levels of sPLA2 in urine from people with ALS and
in the mouse model. Further studies on sPLA2 in humans are being conducted, and a pre-clinical trial of a sPLA2 inhibitor
is underway in the animal model. Funded by the ALS Hope Foundation.
Measuring Quality of Life in ALS: This study aims to validate a shorter, easier to administer, version of the
ALSQOL. Reducing the number of questions, and thus the amount of time for administration is important for individuals
with ALS. This measurement tool will be useful for future clinical management and future studies looking into quality
of life. Funded by the ALS Hope Foundation.
Nutritional Substrate Utilization in ALS: This project is a collaboration between the Neurology and Pulmonary
departments at the Drexel University College of Medicine. In this study we will examine what percentage of energy
is derived from each component of the diet (carbohydrate, fats, and proteins) using a metabolic cart. This will
increase our understanding of the nutritional needs of people with ALS, and improve our ability to provide
the best possible nutrition in this progressive illness. Funded by the ALS Hope Foundation.
Pressure Ulcers in ALS: In this study, we will be examining the use of a specific wound dressing in
preventing the progression of skin breakdown in people with ALS who present with stage 1 or 2 pressure ulcers.
It will be compared to pressure relief alone. Funded by the ALS Hope Foundation.
Tissue Repository: Tissues of people living with ALS can be a precious resource for studies devoted to
finding the cause of ALS. We have set up a Tissue Bank to assist in this critical research. People living with
ALS can donate blood, urine and spinal fluid if they wish. In addition, an autopsy tissue bank has been established
for further studies. Having these tissues available is invaluable to the research into the cause and cure of ALS.
Funded by the ALS Hope Foundation.
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