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.

Saturday, July 29, 2017

Someone, Please Help Ask Some ALS Registry Questions

Tuesday (August 1) afternoon and Wednesday morning, we hope to hear answers.

We also hope that many will listen in to the CDC's ALS Registry Annual Meeting --
https://www.alsregistrymtg.com/

Attendance at the meeting is invitation-only.

For some background, here is the recently published report from last year's meeting --

Here are some questions that I've written in the margins of my dog-eared copy of last year's meeting report:
  1. Why was last year's meeting not webcast?
  2. Why did we only get a report for the first day of last year's meeting and not the second?
  3. Last year's meeting report told us --  "Another important thing is capture/recapture methodology. Lorene Nelson will be giving you a presentation tomorrow on that, and that will allow us to estimate the number of possible missing cases in the Registry."  This seems like a critical project, especially since you are publishing reports that are asserting the demographics of ALS. In reality, we don't know what you don't know.  Could we get some information on what Dr. Nelson presented last year on that second day regarding the recapture and completeness, please?
  4. In its organizational marketing materials, ALSA continues to assert that they help 15,000 people with ALS annually.  In the past, MDA has published similar numbers.  How do we reconcile those totals to the 15,908 people who were found in the entire nation in the last published report from the Registry?
  5. In last year's meeting report, Dr. Weisskopf made a comment -- "So just thinking about it now, it strikes me that another way to sort of look at this is kind of potentially missing cases, is actually to take the people who respond to the portal that are captured in your other databases and determine who in your other databases those web people 22 are missing; right, and then you can sort of use that to figure out for that 20% that don't show up in your databases how many people they're missing sure. And you can up at that point."  That suggestion ended without discussion in the written report.  Plop.  Did anyone discuss that further?
  6. In this climate of likely CDC budget cuts, is anyone making any contingency plans to save the tissue and data in case this project is not funded in the future?
  7. The 21st Century Cures Act included an integrated neuro-surveillance system for a number of neurological diseases. Scientists and taxpayers don't need redundant systems, and to have more neurological diseases represented in a well-designed database could provide valuable insights.  The Cures neuro-surveillance also included authorizations of appropriations of just $5,000,000 per year.  How can they do so much more on so much less budget?
  8. Last year this comment was made in a discussion --  "But after appropriations and CDC overhead, we're more down toward the 6-7-million-dollar mark."  We advocates were told to ask for and we got you a $10,000,000 appropriation for the Registry for one year.  I'm surprised nobody asked this at the meeting, so I will now:  What in the world is CDC overhead that eats up 40% of a project's $10,000,000 that we thought was necessary for the Registry?
  9. Why have you never invited Stephen Finger, PhD to an annual meeting?  http://www.huffingtonpost.com/stephen-finger/national-als-registry_b_5620631.html
  10. In last year's meeting report, a lot was made of difficulties since ALS is not notifiable. In all the years we were told to advocate for ALS Registry legislation, did anyone designing the legislation ever ask that ALS be made notifiable?
  11. Your past meeting reports often mention that Registry reports are consistent with "the literature" or other published reports and registries.  Are there any results from the Registry that are not consistent with other findings?
  12. Has anyone gathered data on what percentage of people with ALS are in Medicare Advantage plans by state or by clinic (in hopes of better defining the related data problem)?
  13. How many researchers have actually requested data from the Registry?  Tissue?
  14. All the paid contractors on this project should be able to provide some data on the effectiveness of their work and not just all the stuff they do or plan to do.  For ALSA, MDA, and Les Turner:
    1. How many people living with ALS were in your clinic system at the end of 2016?
    2. How many new people with ALS entered your clinic system during 2016?
    3. How many of those new people with ALS in your clinic system also self-enrolled in the CDC's ALS Registry in 2016?
We hope that someone who is invited to the meeting will ask and that we all will learn the answers.  Please.  Thank you.