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ALS Q&A - Dr. Kevin Horton

ALS Q&A - Dr. Kevin Horton
Chief, Environmental Health Surveillance Branch

Dr. Kevin HortonGary Barg: Dr. Horton, letís start with the basics. What is ALS or Lou Gehrigís disease?

Kevin Horton: In a nutshell, ALS is a rapidly progressive fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles. Eventually, these motor neurons die and the muscles gradually weaken and waste away. Also, the ability of the brain to start and control voluntary muscle movement is lost. Often times, the ability to move is severely limited. It is a very aggressive disease and unfortunately there is no cure. There is one treatment, but it is limited in terms of its effectiveness: it really only prolongs a personís life on average by about three months.

Gary Barg: What is the goal of the National ALS Registry? 

Kevin Horton: The National ALS Registry was officially launched in October of 2010. There are a number of different goals for this registry. First and foremost, we want to determine the incidence and prevalence of this disease. Right now, ALS is not a reportable disease, so that means that, before this registry, no one was really tracking how common ALS is. We are also trying to figure out who gets this disease and how it affects different sub-populations. Third and probably the most important goal (because we donít know what causes ALS), we are trying to determine the risk factors associated with developing ALS. Lou Gehrig himself was diagnosed over 70 years ago and while we have made progress in understanding ALS, we still donít have a clear indication of what causes the disease. One of the things we are doing through the registry is asking patients who enroll brief questions about their occupation, their former occupation, military service, familial or family history of ALS.  Questions like these try to help us understand the potential risk factors for getting the disease.

Gary Barg: How has the registry been of help to researchers, so far? 

Kevin Horton: We have made great progress in enrolling patients from all 50 states. As with any registry, it takes a couple of years to populate the registry and get the word out to different people that it exists. We are at the point now where we have the data. We are putting it into a report format and hope to have this first report done by May, and possibly sooner.

Gary Barg: Unless we know what the environmental or biographical facts exist regarding the people contracting ALS, we donít know where to start. It is even hard to figure out what molecules to look at.

Kevin Horton: That is exactly right. Even though we havenít published our first report yet, we have been using the registry now for over a year linking patients to researchers who are conducting clinical trials in epidemiologic studies. So far, we have linked thousands of patients with universities around the country who are recruiting for clinical trials and/or studies. The registry is a very powerful tool in that respect. Obviously, you know researchers have to conduct clinical trials. They have to conduct the efficacy of new compounds and drugs that they are hoping to bring on the market. The only way to do that is to have access to a large group of ALS patients. We are also trying to get the word out to researchers around the country that the ALS registry can be used for recruitment purposes. We are very excited about that initiative.

Gary Barg: What would you suggest to caregivers about registering their loved ones for the registry? 

Kevin Horton: The importance of caregivers is that many times patients, depending on what stage they are in, are not able to access a computer or it is not very easy for them. So for that reason, we encourage caregivers to sit down with an ALS patient and help them enroll in the registry.  

Gary Barg: What advice would you have for caregivers with loved ones living with ALS?

Kevin Horton: Well, aside from enrolling into the registry, I would encourage them, if they havenít already, to reach out to organizations, such as ALS Association and the Muscular Dystrophy Association. Both groups have resources available for patients and for caregivers helping to care for patients with ALS.

Gary Barg: So, donít isolate yourself and you are not the only one going through this.

Kevin Horton: Absolutely. People who have ALS donít need to go through this themselves. The disease, in and of itself, is awful. So that person really needs support from their family members and friends. Support groups are also vital to helping a person with ALS cope. Because the people who attend are going through the same thing. Often times they talk about helpful hints, what helps a person get through the day, whether it is a special kind of wheelchair or special kind of diet or things like that. And I think there is power in numbers. You are rightóa person doesnít have to go through this alone.