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.

Thursday, September 30, 2010

Webex Session on ALS Registry Gives Some A for Q and Spawns More Q

https://alsa.webex.com/alsa/ldr.php?AT=pb&SP=MC&rID=60697332&rKey=7f48b8861c3e0651



Below are my questions and the answers to some that I think I heard on the transcript... plus some new questions that the transcript spawned --

· 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? Registry data will be matched against the National Death Index periodically. People who fail to update their Quality of Life surveys on the web portal will be suspect, but the moderators did not indicate whether or how such lack of activity would be used to verify a death.

· 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? I could not understand the whether this question or the next question was the one that was asked on the call. The response indicated that the registry is for U.S. citizens only. Then a respondent mentioned that there were some technicalities regarding legal residents and that there would be followup on the question.

· 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. They don't anticipate a problem given the number of attributes that each database has on a patient.

· 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? ALS is not a reportable disease and therefore physicians are not required to report it as they are with other diseases such as cancers.

· 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? Absolutely.

· 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?


And the transcript raised more questions in this enquiring mind --

  • There were assurances that deceased people with ALS would be captured via the national databases but not via the web portal. How far back will the registry reach to find dead people in those national databases. If somebody was on Medicare in 1990 and died from ALS, will he or she be included in the registry?
  • What would it take to make ALS reportable so that a physician diagnosing a case would simply be required to report it to the CDC?
  • The call emphasized that information would be provided to patients. This causes some concerns that general information on ALS will be maintained on yet another website. Will the CDC and ALSA and MDA coordinate so that all three organizations might share content rather than having your taxpayer/donors create and maintain redundant or competing content?
  • Are the educational materials on the patient page of the portal related to ALS in general or specifically to the ALS registry? Again, it seems appropriate that this be the go-to site for information on the ALS registry.
  • On a similar conference call sponsored by the MDA a few months ago, we heard that the registry was ready to go as soon as OMB approval came through. On this call we heard that there are two more hurdles, the CDC security hurdle and the CDC deployment process. Are there any other hurdles we should know about?
  • The state-based surveillance process described an abstract form for state health departments to supply to neurologists. Are neurologists required to respond to such requests?
  • Could you please explain exactly what was launched with the soft launch of October, 2009?
  • www.cdc.gov/als supplies a link to the NIH information on ALS. NIH materials have asserted for well over ten years that "As many as 20,000 Americans have ALS." When the CDC's ALS registry proves that many more than 20,000 Americans have ALS, will you be able to get the NIH to update their claim, please?
  • A feedback feature on the web portal was mentioned. Will the feedback go directly to those responsible for the ALS registry or will it be routed through the general CDC "contact us" process?


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.

Sunday, September 26, 2010

Walks Aren't Just About Fundraising

They are a reason to talk about ALS in the media. They are a reason to talk about ALS with people who can help find the cure. They are about pulling together a vast community with this beast of a disease in common. They are about awareness.

Friday, September 24, 2010

Start Your Engines, Raise ALS Awareness!

On Saturday, September 25, the Nationwide Series at Dover will feature a car driven by ALS awareness. Actually Willie Allen is driving the car, but he is making his recent loss of his father to ALS drive him to raising ALS awareness.

Fire up the television at 3 pm EDT and turn to ESPN2. Their coverage is always great, and we're hoping that the 05 Chevy is in front and on-camera at the finish! Thanks, Willie Allen.

Tuesday, September 21, 2010

Q4 2010 Is Just Around The Corner... Is The ALS Registry Finally Here?



Following is information from the ALS Association Washington, DC Advocacy Office:

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


We are pleased to invite you to participate in an interactive webinar on the National ALS Registry on Tuesday, September 28, 2010 from 2:30 to 3:30 pm (Eastern). Leaders from the Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention (ATSDR/CDC) will present the latest news on the Registry as the Agency prepares to launch the Registry’s online web portal, which will permit people with ALS to self-enroll in the Registry.

The webinar is designed specifically for people with ALS and their families to help you prepare for the launch of the web portal. Specifically, the webinar will include:
Background information and an update on the implementation of the Registry and web portal;
A preview of the online web-portal that PALS will access to enroll in the Registry; and
Information about The ALS Association resources that will be available to people with ALS and families, including online resources.
In addition, the webinar will provide you with an opportunity to ask any questions you may have about the Registry and the web portal.


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

Space is limited to the first 200 participants so please plan to login early to secure your spot.

To join the audio conference: Call-in toll-free number (US/Canada): 866-699-3239 Access code: 827 385 412 Meeting Password: Registry3

If you have any questions, please contact the Advocacy Department at
advocacy@alsa-national.org. Thank you!

Friday, September 17, 2010

Whoa... It's Not Over Til It's Over!


If you're from Alaska and have any interest in ALS, we encourage you to consider writing L-i-s-a M-u-r-k-o-w-s-k-i on your left hand and then writing her name in carefully on your ballot in the upcoming Senatorial election. Senator Lisa Murkowski has been a genuine mover and shaker for the ALS cause.

Note the red Strike Out ALS wristband in this pic from her announcement of her write-in campaign. She gets it. She has seen Lou Gehrig's Disease and she is willing to do something meaningful about it.

Wednesday, September 1, 2010

The Work Of ALS Advocacy Just Got A Whole Lot Harder


How often have we seen a person of influence taking the initiative to wear a Strike Out ALS wristband on national television? Once.

Senator Murkowski, thank you for all that you did behind the scenes to help us get a national ALS Registry and to help us get precious research funds for ALS.

Thank you. You're the best.