The ALS registry will collect and examine data from thousands of people with Lou Gehrig's Disease.
Tags:What is the ALS Registry,amyotrophic lateral sclerosis,icyou,lou gehrigs disease,maladie de charcot,motor neuron disease
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You know when you cut through all the clutter and mess and we are really a Science-based profession and what is Science? Science is data. We can’t function without data unless we have the data supporting a medical condition, a disease, what causes it, what can potentially cure it, who’s at risk for it, what the signs and symptoms are. Then we really are at a lost about how to collectively approach it as a medical profession. This registry will help change all that. This registry will register not only patients who have ALS through the centers of disease control and prevention but also as I mentioned with the signs and symptoms where the ages that are affected, the genders that are affected, the races, and with all that data, once we pull it, we can do a better job of figuring out who’s at risks, is there a certain part of the country where people have more risks since we really don’t know what causes ALS. And once we have all that data again, what we would do is we would say, “Now, that we have all this information, this is how we need to approach the research and the cure.
And that’s why having the registry will help us even in making the diagnosis. Right now, ALS is largely what we call a diagnosis of exclusion. That means, you look at the battery of medical conditions that can possibly fit with your patients signs and symptoms and you eliminate them one by one. And the last one left on the list is ALS, you know, is the patient having muscle weakness? Is the patient having trouble in later stages, breathing and swallowing? And then there are few tests you can do. You can do some fancy x-rays. You can do what we call an EMG which where we test the ability of the muscles to transmit electrical impulses through the nerves and all of those tests collectively with the patient’s signs and symptoms, we are able to say now with a 100% certainty but we’re able to say this could possibly be an ALS. And like many other medical conditions and many other diseases, the sooner you diagnose ALS, the more you can do for the patient. ALS could be an exception in one way and that we really only have one medication that is supposedly help slows the progression of the disease but we hope with this registry, with new research, with new information that we will be able to create more medications and approach it from different angles so that we are able to treat it sooner and of course with most medical conditions when you treat them sooner, you treat them better. And it’s really as with many medical conditions, it’s not about increasing a person’s lifespan because I saw my father essentially turn into a vegetable. He couldn’t communicate. He couldn’t eat. And it was very painful for all of us to see that. So, what my personal hope is that we increase quality of life, not life expectancy with a poor quality of life but life expectancy with a good quality of life.
One of the things that is so bewildering about ALS is that so many people are affected so differently that is why we need a registry to put all of our heads together, to put all of the patients names and commonalities together so we can figure out what are those links. Why do some patients die within a year of being diagnosed whereas other patients will live their whole life in a wheelchair with breathing assistance? We just don’t understand enough about it. And again, the registry will be instrumental in helping us to learn more about the disease and more about how to treat it and how to treat it earlier.
That’s one of the great things about the internet, is again we’re able to put our heads together collectively online with physicians and researchers from all over the world. It’s not even about the United States anymore, we don’t have to go to those big, fancy once a year conferences where we share ideas and we learn a little bit about what everyone else is doing. We can go online and we can share ideas and share our data that way. And the reason the registry is so important is because once we are able to put all of the data together about everything we know about the patients that we’ve treated with ALS, we might be able to see patterns. We might be able to see trends. We might be able to see common linkages. Wait a minute. We didn’t think of that because as an individual physician, I’m treating 10 patients with ALS but let’s put our heads together and let’s look at the commonalities of the hundreds of thousands of patients who ALS across the world and let’s figure out what those commonalities are so that we can approach them from a treatment standpoint.
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