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[Iskander] Hello, I'm Dr. John Iskandar.
Welcome to CDC Beyond The Data.
I'm here today with Dr. Paul Mehta, principal investigator
of the CDC ALS Registry.
Thank you for being with us today Dr. Mehta.
[Mehta] Thank you John for having me here.
It's an opportunity, and it's an honor to be here
to actually have the privilege to talk
about the registry with the group.
[Iskander] So remind us, start by reminding us what ALS is
and how CDC came to be involved in monitoring this disease.
[Mehta] Sure, so ALS is a motor neuron disease.
It's also known as Amyotrophic Lateral Sclerosis
or Lou Gehrig's disease.
It was named after a famous New York Yankees player back
in the 1940's who passed away with this disease.
CDC was tasked back in 2010 to go and establish a registry.
The purpose of the registry is multifold, so, for example,
we look at the prevalence and incidence of ALS,
we look at the demographics of disease,
who gets the disease itself, and we also look at risk factors.
What causes the disease, etiology and so forth?
[Iskander] So what have we learned, you know,
so far about who's at most risk for ALS, and what are some
of the things we've learned from the registry so far?
[Mehta] So, for whatever reason,
we're not sure why ALS affects whites and especially males more
so than any other group.
That's a quandary out there.
It predominately is a disease of Caucasian individuals,
and it's one of those vexing issues where we want try
and figure out why does it affect males
and especially whites more so than any other group.
And research is currently being done to kind
of look at the facets of ALS.
ALS is two-pronged.
So there is sporadic ALS which is environmentally linked,
and there's also familial ALS which is linked to genetics.
So those two areas or those two facets make up ALS as a whole.
90 percent of the cases are considered sporadic and 10
to 15 percent are considered genetic.
[Iskander] So again, obviously one
of the important reasons we do surveillance
for any condition is to help get a better understanding of it
that might lead to, to preventive interventions.
So people I think may have heard about a couple of sort
of emerging ideas about risk factor,
and these involve veterans and certain types
of professional athletes.
[Mehta] Sure.
[Iskander] What does the data tell us about...
[Mehta] Sure.
[Iskander] ...those types of groups?
[Mehta] So you know, I like to say there are more unknowns then
knowns about ALS.
It's a disease, where I mean,
it's been around for probably 200-300 years
and even before that.
And once it was finally, you know,
came to the forefront this is ALS.
This is the symptomology of ALS and so forth,
and this is what affects.
I think that's where, you know, you start kind of dive
in deeper in the data itself.
Your question regarding veterans as well
as athletes is really, really poignant.
Veterans, for whatever reason, get ALS at a higher rate
than let's say nonveterans,
and so that by itself is really, really...
It's troubling and worrisome as well.
So for whatever reason, our military veterans are
at a greater risk of ALS.
We're not sure if it's linked
to potentially environmental exposures.
It's just not known exactly why they get ALS...ALS
at a higher rate than non-vets.
Considering athletes, athletes by themselves,
especially football players for whatever reason, we're thinking,
you know, it may be due to repetitive concussions.
That's perhaps somehow I'm starting the ALS progression
or the start or the insult itself,
but were not sure why football players
at this time are getting ALS then let's say
non-football players.
It's certainly very concerning.
Football is a, you know, a sport which is loved by many,
many individuals and myself, and so it's one of those things
where I think we need to go ahead and have more research
to figure out exactly what's causing ALS
in these population groups especially veterans
and especially athletes.
[Iskander] And I know that, you know,
as we saw in today's session, the registry actually works
with veterans group doing outreach to promote awareness.
[Mehta] Absolutely.
So we work with multi-partner groups such as ALS Association,
MDA (Muscular Dystrophy Association),
as was as Les Turner ALS Foundation.
So we work with these groups, as well as, Veterans Administration
to go and raise awareness about ALS.
The VA is an important partner.
We get our data from the VA regarding veterans who have ALS,
and so certainly we try to work with all individuals
who are affected by this disease.
[Iskander] Okay, certainly.
Another thing many people in the audience may have been aware of,
something that brought a lot of attention to ALS,
was from a couple years back the ice bucket challenge.
I guess from your perspective,
did this bring more cases into the registry?
Did it bring more attention to the condition?
How did it affect your work?
[Mehta] Sure.
Well ALS is a rare disease, and, being a rare disease,
sometimes it doesn't garner the attention as let's say,
you know, breast cancer or some
of the more commonly associated conditions out there.
So the premise is, of the ice bucket challenge was very,
very important to raise awareness about ALS.
It certainly raised awareness about the registry.
We had more individuals coming to the registry online portal
to go ahead and register and say they have ALS
and take our risk factor surveys,
so that certainly was important.
And so, the ice bucket challenge was instrumental
in raising the national as was international, you know,
awareness about this particular disease.
I think more attention certainly needs to be done.
Ice bucket challenge is probably I think two years old now,
as of this August.
And so, I think we still want to make sure
that we have more attention paid
to ALS especially along the research community
and especially among, you know,
making sure the patients are taken care of as well.
[Iskander] Certainly, so I think many people have this basic
concept of public health surveillance
that it is fundamentally about sort of counting cases.
Now the ALS Registry takes a lot of steps beyond that.
You alluded to the risk factor surveys, but could you tell us
about some of the other initiatives
that the registry is involved with?
[Mehta] Absolutely, so it's very, very important.
We do a lot than just count cases.
I mean, now looking at the epidemiology.
The prevalence of ALS certainly is very important,
but we do a lot more than that.
And one of the things we do is we help researchers go ahead
and recruit for the clinical trials or the research studies
by having them connect with our patient pool.
And so, that's through our notification system.
We call it to go and connect researchers
with patients before clinical trials and studies.
That certainly is very important considering there's not
that many clinical trials these days for ALS, and the ones
which are there are very, very expensive.
And so, we have a mechanism that allows pharmaceutical companies
to come to us and use our registry to go and recruit
for these particular clinical trials.
Another facet is we also fund research,
so we fund our research looking at the etiology of ALS.
You know, what causes this disease.
So, that's very, very important,
and more importantly we just launched the National
Analyst Biorepository.
And the biorepository is gonna' facilitate the ALS research
and biomarker study, environmental conditions,
environmental risk factors per se, as well as,
looking at the genetics behind ALS as well.
And the biorepository will allow patients to come in,
opt-in for more information.
We'll go and send them a packet, and they can go and opt-in
to receive...a phlebotomist will come to their home
and will go ahead and take their blood and their saliva,
and that will be added to the biorepository.
And we also have a postmortem collection as well,
so for those individuals who want to go ahead
and donate their body to science,
that's also available as well.
So, the biorepository as a whole,
we feel it certainly will expand ALS research down the road
and try to find out, you know, what causes this disease
and ultimately look for therapeutics for ALS.
[Iskander] So again, coming back to one of those kind
of fundamental tenets of surveillance
that you want your surveillance to help both learn more
about the disease but ultimately to help to help control it.
[Mehta] Absolutely, absolutely.
Without surveillance were not gonna' know A. what the disease
count is, who gets the disease and possibly as in terms
of etiology as well surveillance is very, very critical for ALS.
[Iskander] So yes, certainly I think the ALS Registry,
in my view, sort of stands as really a model for, you know,
where surveillance could be going in this century.
Again, beyond the traditional model,
so I'd like to thank you very much for joining us today.
[Mehta] Thank you, John.
Thank you very much.
[Iskander] Please join us next month for Beyond The Data.
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