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BethU

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Joined
May 11, 2008
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2,646
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, guys ... apparently there are two national registries ... or am I completely "Lost" again?" The one for vets and the one for everyone in US with ALS?

Anyway ... received this notice from ALSA. In order to receive updates from ALSA about the progress of the registry and when we can begin entering our data, you must register as an ALS Advocate. If you don't want to do this, you can still check progress by going to the links in the e-mail below.

Wouldn't it be great if other countries do this, too, and we can get a REAL picture of the extent of ALS?

_______________________________________

CDC/ATSDR Launch National ALS Registry Website

Today, October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is launching the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. The website is available at CDC - Amyotrophic Lateral Sclerosis. The ALS Association also will host a link to the Registry website on our homepage at Welcome - The ALS Association.

In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families.

In the next phase, the website will enable people with ALS to enroll in the registry. However, before that can happen, ATSDR must first obtain an Institutional Review Board (IRB) approval and other approvals required by law to ensure that personal information collected by the registry is kept private and protected from misuse. This process already is underway and The ALS Association will assist in any way we can to secure the necessary approvals in order to speed enrollment in the registry.

Enrolling in the Registry
As ATSDR pursues the approvals necessary for the next phase, we are partnering with the Agency to keep the ALS community informed and we will notify PALS as soon as they can self-enroll via the ALS Registry website. If you would like to receive this notice, please visit The ALS Association's website at Public Policy - The ALS Association and sign-up to be an ALS Advocate. Please select ALS Registry when signing- up. This is especially important because, due to privacy rules, PALS will not be able to request that ATSDR notify them about the status of the registry, including when they can begin to enroll.

If you have any questions about this update, please contact The ALS Association at 1-877-444-ALSA.
 
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"I am inspired by the idea of critical mass. It's amazing that if enough of us do one small thing, we can change the world."

One of my favorite quotes from Brene Brown Phd

I do soul believe in the idea of critical mass and that we CAN change the world!
 
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Hey Beth! It is just you and I again. :[
 
I think that it is great that there is going to be a national registry for ALS and although it is not my place to comment because I am not an American citizen I wonder about the wisdom of having two registries. If there is going to be one for vets and another for everyone else won't that be at best redundant and at worst take resources and energy away from each? I do hope that if there are two they can be set up so that they are compatible with each other and could be integrated at a future date. The most important factor in any survey is how it is designed, like the old computer science saying "garbage in, garbage out" if you don't ask the right questions you won't get the right answers.

Does anyone know if this type of registry is being contemplated or planned in Canada? While all PALS would benefit from answers obtained by the US registry, I would like to know that I am helping and pulling my weight by contributing to a Canadian registry.

Thanks for the info Beth.
 
If there are two registries, Barry ... and I must sign on to the website to try to understand the legislation (sigh) .... the vets one would probably be for the purpose of obtaining benefits and also to investigate what is truly a "cluster" of ALS among vets from all wars. Vets would also register in the large one.

I hope Canada follows suit. And I wonder if vets from other countries that participated in the two Gulf Wars particularly are at increased risk? Anybody in Canada, the UK, or Australia know how your vets are faring?

If the plan the US has developed to gather data works well, it should be easy to adapt elsewhere.

Indigosd ... when this gets closer to being online, I think it will galvanize the ALS community. Till then, we cling together!
 
THe U.S. National Registry of Veterans with ALS stopped enrollment back in September, 2008, when funding ran out.

Right now, although veterans are receiving benefits, their medical data are not being enrolled in any kind of epidemiological database.

So... until late 2010 when the U.S. national registry is launched, data aren't being retained for veterans or for non-veterans.
 
Thanks for the clarification. I was really confused.
 
Beth, continue to be confused! That information is not completely correct. Yes, the Veterans Administration did stop enrolling Vets into that registry last year. BUT it does appear that the VA is intending to begin it's own registry that will correlate with the CDC registry. I am going to phone National immediately to see if I can get it clarified. This reminds so much of that thread that I started asking PALS and CALS to email their elected officials about passing funding for the Bill some time ago. Remember? I had several people tell me that I was wrong until they really read the information. We need to be very careful to not dismiss action or advocacy unless we have all the facts. Right?!
 
I can't get through and have to leave for our Son's football game. Will try again in the am.
 
Right, as always!

I was wondering if they would be asking vets different questions than the general public, but we should all be giving complete info on vaccinations, toxic exposures, etc. Not many of us have dealt with Agent Orange, thank heavens, but vets' experiences should be included in the big database. I hope they will.

Of course, the DOD has immediate need for this kind of info. If there is something they are doing to our armed forces that is contributing to ALS clustering, they need to take action.

But still ... as Barry says ... we're all in this together.
 
indigosd, if you are able to find anything out, I'll appreciate your posting. My understanding as of last May was that VA would not generate its own information silo but would participate in the U.S. National ALS Regsitry being developed by the CDC. It's hard to get information and status reports from the CDC on this subject, so if you find out anything new, thanks for sharing.
 
rknt50a, I looked at your profile and you appear to be such a advocate for ALS. THANK YOU! I saw that most of your 36 posts over the 2 years are mostly about advocacy issues. I would love to hear your story of how and why you became an advocate for ALS. Are you affilated with an organization? Thank you.
 
Another source of information is the ALS Matters forum. It's new and is focused on developing real-time speech augmentation software plus advocacy, and Jeff, who founded it, is one of the most effective and active ALS advocates around.

Indigosd, when I rest a bit and sign back in I'll start a thread on that forum, too. If there's anybody who's connected and knows what's what, it's Jeff. (He's Zenarcher on this forum.)

Let's keep the topic perking here, too ...
 
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indigosd,
Lost Mom to ALS 12 years ago. I've been at this way too long, but I won't quit until they get this stinking disease figured out.

...as an independent individual who is supportive of the many charities engaged in the fight.
 
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