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Symptom Management Trials

TIV (Tracheostomy with Invasive Ventilation) for Patients
with ALS in Japan and the U.S.A.: A Comparative Study

Over the past 20 years, it has become increasingly recognized that the choice of tracheostomy with invasive ventilation among people with ALS varies tremendously between countries, between regions in the same country, and even among colleagues at the same institutions. The most striking disparities in rate are perhaps those between the United States and Japan. In The United States and Western Europe, the rate of TIV is about 3-5%. In contrast, rates of TIV are much higher in Japan with about 30% of Japanese patients choosing TIV. A collaboration of Japanese and American investigators proposes to conduct surveys in both countries of patients, caregivers and neurologists. The goal is to develop a more comprehensive understanding of decision-making and perceived advantages and disadvantages of TIV in the view of the various stakeholders, and implications for improved clinical care.

Status: Expect to begin enrolling Spring 2011.

Optimizing Noninvasive Ventilation

The purpose of this study is to test if feedback based on device data cards improves the use of non-invasive positive pressure ventilation (NIPPV) in individuals with ALS. NIPPV has been shown to provide effective noninvasive breathing support, to extend life, and to improve quality of life in ALS. The data card records critical information about the use of the noninvasive ventilator including how much it is being used (acceptance) and whether there is mask leakage or differences in the amount of air movement. However, to date data card monitoring has not been incorporated into routine ALS clinic practice. Therefore we want to investigate whether data card monitoring and communication of these results to clinicians and patient families promotes "optimal use" of NIPPV including better acceptance and adherence.

Status: Currently enrolling.

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.

Status: Currently enrolling.

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.

Status: Currently in data analysis.

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.

Status: Currently enrolling

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.

*Clinical Research Programs Funded by the ALS Hope Foundation