Welcome to the ALS Registry

• By pwildman
• Posted August 16, 2006 at 12:12 pm
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Bobby,

Thanks for sharing the Patients Like Me site. Oldchuck also posted your information about this on his blog last week. I submitted a comment at that time just to make sure people are aware of the various ALS databases that exist and to encourage them to contact their Members of Congress in support of the ALS Registry Act (H.R.4033/S. 1353). I am reposting my original comments to Chuck below.

If you or anyone else has questions about the ALS Registry Act, please don't hesitate to contact me in ALSA's Advocacy Department at pwildman@alsa-national.org or toll free at 1-877-444-ALSA. Thanks!
- Pat Wildman

The following originally was posted August 10, 2006 in Oldchuck’s Blog

In addition to Patients Like Me, there are several databases that have been in existence for some time that collect information about people with ALS, including the ALS CARE Database and ALS Connection to name a few. We’re aware of a few others that have been discussed in various states that aim to collect similar information about PALS.

In addition, there are publicly funded efforts underway, including the Veterans Administration (VA) ALS Registry, the VA DNA Bank, and the genetic repository at the National Institute of Neurological Disorders and Stroke (NINDS). In fact, at Advocacy Day in each of the past two years, PALS were able to donate blood/tissue samples for the repository at NINDS. If people would like to participate in the NINDS repository, they can contact ALSA’s Patient Services Department at alsinfo@alsa-national.org or 1-800-782-4747. Veterans with ALS can enroll in the VA ALS Registry at http://www.va.gov/durham/alsregistry.asp. Some of the information collected by these databases is similar, although the data is collected in different ways by different people for different purposes.

As you know, one of our top priorities this year is to establish a single nationwide ALS Registry at the Centers for Disease Control and Prevention (CDC). In addition to identifying the number of ALS cases and collecting a wide range of vital information about people with ALS, the National ALS Registry will track people over time and will build on and coordinate with existing ALS data collection efforts, such as the NINDS Repository and the VA Registry. In effect, the National ALS Registry envisioned by the ALS Registry Act (H.R. 4033/S. 1353) is a comprehensive and continuous ALS research project that not only will enable us to develop and improve standards of care, but also discover new therapies and a cure for this disease.

It is important to note that the National ALS Registry would be maintained and operated by an unbiased, independent entity - the CDC - which will help to ensure an accurate accounting of all people with ALS, regardless of their connection to ALSA or one of the many family groups supporting people with ALS.

You have done a great job promoting the ALS Registry Act, and because of the efforts of advocates like you, 192 Representatives and 42 Senators have cosponsored this important legislation!

I strongly encourage everyone who reads this to also contact their U.S. Representatives and Senators and urge them to cosponsor the ALS Registry Act. Sample letters people can personalize and send directly to their Members of Congress are available in the Advocacy Action Center of The ALS Association website, at www.alsa.org/policy. The site also will allow people to easily identify their Members of Congress and learn whether they have cosponsored the bill.

This is a great way to advance the effort to establish a National ALS Registry. If people would like additional information about how they can help pass the ALS Registry Act, or if they have any questions, they can contact me in the Advocacy Department of The ALS Association at pwildman@alsa-national.org or toll-free at 1-877-444-ALSA.

Thanks again Chuck!
-Pat Wildman

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• By BobbyB
• Posted August 16, 2006 at 12:55 pm
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hi pat, im all for the national als registry and i to strongly encourage everyone who reads this to also contact their U.S. Representatives and Senators and urge them to cosponsor the ALS Registry Act.

but pals and cals wont be able to view it.

this registry i started is by pals4pals who want to share everything (almost 400 patients using the Internet to
declare publicly that they have this debilitating disease) and with the help of PatientsLikeMe they can view and have
their own detailed profile page and can come back as often as they want and update their info, so it is as current as possible, plus see what other pals are doing and how they are doing it, what they are taking.

thank you for everything your doing pat.

You can help by passing this info on to other PALS.

http://www.patientslikeme.com/registry

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us

ALS IS NOT PREJUDICE
WHERE EVER, WHEN EVER, WHO EVER

and thank you chuck,,,,

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• By pwildman
• Posted August 16, 2006 at 3:32 pm
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Thanks Bobby. I appreciate your efforts to bring the ALS community together and to support the ALS Registry Act. It's through the efforts of PALS and CALS that we will improve living with ALS and find a treatment and cure.

I just wanted to clarify that the ALS Registry Act would provide for public access to the registry via an electronic national database. Access would be provided in a manner that complies with medical privacy laws and ensures personal privacy. In addition, the ALS Registry Act would provide a way to put PALS in contact with researchers studying the disease, including those conducting clinical trials. And PALS and families would have a significant role in the creation of the Registry as the bill provides that PALS and their family members serve on the National ALS Registry Advisory Committee, which will make recommendations on the development and implementation of the registry, including the availability of registry information.

Thanks again Bobby!
- Pat Wildman

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