ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, September 28, 2010

Today's The Day To Ask And Learn

From the ALS Association --



ALS Registry Webinar
Tuesday, September 28, 2010
2:30-3:30 pm Eastern

We look forward to you joining The ALS Association for Tuesday’s ALS Registry webinar, which takes place, September 28, from 2:30 to 3:30 pm Eastern.

The webinar is designed specifically for people with ALS and their families and will provide the latest news on the Registry, including the launch of the Registry’s online web portal. The web portal will permit people with ALS to self-enroll in the Registry.

Limited Space
Information on how to access the webinar is below. However, space is limited to the first 200 participants so please plan to login early to secure your spot. The webinar will be recorded and made available to people following the presentation.

Submit Questions in Advance
The webinar will provide you with an opportunity to ask any questions you may have about the Registry and the web portal. Because of the large number of potential participants, we request that you submit your questions to us in advance of the webinar. This will help ensure that we and the CDC/ATSDR will be able to respond to as many questions as possible during the hour-long program. You may submit your questions to advocacy@alsa-national.org, under the subject line ALS Registry Webinar Question. You also will be able to submit questions during the presentation using the webinar’s “chat” function.

WHEN: Tuesday, September 28 at 2:30pm Eastern
WHAT: National ALS Registry Webinar

HOW to Access the Webinar Presentation:
To join the webinar and view the presentation on your computer, go to: https://alsa.webex.com/alsa/j.php?ED=140870002&UID=1134170547&PW=NMjMyMzU3YzU3&RT=MiM0.

Follow the online instructions, which will allow you to join the audio portion of the webinar through the receipt of a return phone call.

You also may join the audio conference by calling 1-866-699-3239 and entering:
Access code: 827 385 412
Meeting Password: Registry3


We look forward to your participation!


That's great that they've offered a chance to submit questions in advance and are recording the webinar for those of us who shouldn't be using up the 200 seats or are unable to make the call (yet are very interested in seeing a successful Registry). My submitted list of questions is below. I'll post responses as I learn them.

____________________________________________________
Thanks very much for asking for questions in advance of the call. Some of these you’ve seen before. I hope to learn the responses on the transcript or shortly after. Thanks very much.

· ALSA has published that your algorithms for mining the large administrative databases will identify 80-85 percent of ALS cases. Who are the people in the 15-20 percent who are not found via this process? I assume that there must be whole lot of people diagnosed with ALS who are somehow outside of Medicare, Medicaid, VA, etc. databases.

· One of the Achilles' heels of the many attempts at self-reporting over the years has been the inability to capture the death event in a timely and accurate manner. How does your process capture the death event?

· Suppose a scientific study suggests a new environmental trigger possibility. Please describe the process you will use to expand the Registry to capture data on that possible trigger. Will it be nimble enough to do this quickly? Will additional requests for appropriations be needed to adapt?

· How much has been invested so far on the Registry project? About what proportion of that has been CDC employees’ time? … private-sector contractors?

· As I understand the process, it seems that you will be mining data in a number of administrative databases that are unique to the United States. Should we infer that the infrastructure built for this Registry will not be useful to be leveraged by other countries that might want to emulate the U.S. Registry? Is there any data standard or protocol that will enable scientists to pool data from the U.S. and other countries easily?

· If citizens of other countries are legal residents of the United States and are treated while living here, will their data be included?

· If citizens of other countries are illegal residents of the United States and are treated while living here, will their data be included?

· If the people dealing with coordinating information in the various administrative databases and the online portal have a "is this the same person" question, will they be able to make phone calls to the individuals or sources of the administrative records to resolve the uncertainty, or are they stuck solely with the data in front of them.

· Many people with ALS aren't diagnosed until long after onset. Will the Registry data capture anything regarding patients' onset dates?

· Is it correct that the physician does not report anything directly to the Registry? My understanding is that the physician has nothing new to do and that cases will be identified passively from the codes on the normal medical records, Medicare billings, etc. Is that correct?

· What is the process for a scientist to get access to Registry data? Are the expenses of dealing with a lot of requests for data already built into the Registry budget?

· Will there be any routine publications of information from the Registry for the general public?

· Does the informal advisory group for the Registry still meet? If so, is it possible to coordinate meeting dates so that the ALS advocacy national meeting receives current information? It seems that in the past the advocates meeting in May has been almost a year behind on status information because of the advisory group meeting in June. Also, is there a reason why both ALS and MS surveillance were included in that advisory group?

Thank you.

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