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ALS Multidisciplinary Clinic
Clinic: 617-724-3914 Neurology Access Center: 1-855-MGH-NEUR (644-6387)
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ALS research at Mass General
Clinicaltrials.gov is a central database of clinical trials for all conditions, including ALS. It is an important resource for finding a clinical trial that is right for you. All trials enrolling subjects in the United States, and most trials being conducted worldwide, are listed on this site, so that it is a great place to start searching for what kinds of trials are available.
Here are some helpful tips for searching clinicaltrials.gov:
Tip: Use “amyotrophic lateral sclerosis” rather than ALS to avoid bringing up non-ALS trials
There are several ways to refine your search:
Let’s say you want to find a trial of a new treatment that is currently recruiting patients in your state Massachusetts for instance). That means you want a trial that is interventional (testing a new treatment) and “open” (currently recruiting patients), that is taking place in Massachusetts. Your search screen should look like this:
UNDERSTANDING YOUR SEARCH RESULTS
Your results page lists the trials meeting your search criteria. You can click on each to get further details about the trial. The details may be challenging to understand at first glance. Here are some tips to help you get the most from this information:
CONTACTING THE STUDY TEAM
Although clinicaltrials.gov is an excellent resource and provides accurate information, important aspects of a trial may not be made clear on the site. For this reason, if you are interested in a study, it is a good idea to discuss it with your ALS physician.
A good next step is to call the study team at the number listed on the website. Each study site will list the name and location of the institution, the name of the Principal Investigator, and the name and phone number of the person to contact. The “Principal Investigator” (also called the Site Investigator) is the physician who is heading up the study at that location. The contact person is typically the Research Coordinator, who is often a nurse or administrative assistant trained to coordinate clinical trials.
The Research Coordinator takes responsibility for many of the hands-on and day-to-day tasks in conducting the trial, including patient registration, data collection, safety monitoring, and coordination with the site investigator and principal investigator.
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