transitive verb 1: to hit hard : 2: to plod (one's way) perseveringly especially against difficulty intransitive verb 1: to plod heavily : 2: to work hard and steadily
Welcome to an ALS Log (Slog), a chronicle meant to help us pay attention to ALS.
The world didn't need just another blog, but it can use everyone's help to be relentless as we slog away to ensure that the data and clues from every patient with ALS are counted and retained so that the cause and cure can be found.
March 22, 2010 -- Are We There Yet? Are We There Yet?
ALScounts has been trying to pay close attention to ALS registry issues since first hearing the idea floated by some patients at the advocacy conference seven years ago. At that time the epidemiologist speaking to a small group on some local ALS statistics was not encouraging. He stressed the difficulty of producing and maintaining such a thing. His words were, "Registries are hard work." ALScounts has always regretted not having raised a hand to say, "ALS is hard work, too."
Here's my trip down memory lane and my evolving understanding of the U.S. national ALS registry effort. The Roman numerals are just because some of this feels like it was so very long ago.
MMVI -- That was the first year when the dim light bulb in my brain lit up. They were not talking about mandatory reporting by physicians in the proposed registry legislation. My naive assumption had been that when a doc diagnosed ALS that a piece of paper (or even better, a web form) would be submitted by the physician to get that person enrolled in the registry. My understanding that developed in 2006 was that mandatory reporting (which does exist for some diseases) is not likely to be legislated in this day and age, so forget that concept. The registry would fish through existing files from Medicare, VA, Medicaid, healthcare providers, and perhaps even organizations such as ALSA, trying to locate unique cases of ALS. The three pilot studies which were well underway had the purpose of finding the best methods and best practices for a national registry. The approach that I understood from the 2006 presentations at the advocacy conference reminded me much of having to fish through old flat files looking for matches. Keep in mind that in the olden days, your social security number was often your medical record id in most systems. In recent years that has all changed and medical records are often purged of social security numbers because of identity theft issues. I'm sure that it's a difficult task to figure out whether the patient 23456 in the Medicare system is the same person as patient 432A1 in the Kaiser database.
MMVII -- We new that the pilots were moving forward and received promising but vague reports on those from ALSA. My perception was that the pilots were not exactly the building blocks that sold so well as we asked for appropriations on Capitol Hill, but rather were truly independent pilots to test processes and to figure out what processes would cast the widest and most effective nets to find ALS cases. I would think that the pilot results were the basis for the requirements for the real registry. I also asked one of the CDC presenters privately at the ALSA conference that hear how long it would take to deliver a working registry if everything went swimmingly well. He was understandable reluctant to answer but told me that it would involve a minimum of two years to come up with a deliverable after passage of ALS registry legislation. Here's the world as we knew it in 2007 -- http://www.alsa.org/news/article.cfm?id=1094
MMVIII -- The ALS Registry Act was passed very late in the year and we all got educations in the ticky tacky hold tactic used by Sen. Coburn of Oklahoma.
MMIX -- We received reports from ALSA that things were moving right along, but if I recall correctly, at last year's May advocacy conference, we did not get specifics because they were waiting for the results of a June meeting at the CDC. That timing seemed unfortunate to me. At the end of 2009 we finally got some information. http://tinyurl.com/y8c39wa The portal was disappointing to me at the time (we had waited a long time for a few flat pages), but at least it gave us a first inkling that self-reporting was going to be a part of the registry. Certainly that's another nice way to find patients, but it adds yet another pot of data to coordinate with Medicare, etc. records, and I'm sure that extends the development complexity. Self-reporting isn't the end-all answer with ALS since it's difficult to have the death event reported. The national push to electronic medical records that we all sensed in 2009 also gave us hope that the data fishing expeditions might be simplified in the future with a well-coordinated medical deliver information infrastructure.
MMX -- In the last few months we have seen the very helpful timeline added at http://wwwn.cdc.gov/ALS/ALSTimelines.aspx . After relentless inquiry, I found out that the formal advisory committee that was in the early drafts of the ALS Registry Act was replaced with an information advisor group in the final legislation that passed. The group met last June and my impression is that it will meet annually. The names and titles of the preliminary attendees that I saw were impressive (researchers, CDC folks, statisticians, neurologists, clinicians, ALSA representation, MDA representation,...). The meeting was entitled "Amyotrophic Lateral Sclerosis and Multiple Sclerosis Annual Meeting" and was held June 24-25, 2009, in Atlanta. Why Multiple Sclerosis? I don't know, but if two projects can benefit from one advisory group, I'm all for being efficient. I couldn't tell from the list if anyone who actually has ALS attended although the CDC indicated that patients are included in the group. Methinks that someone living with the ticking ALS clock lends a helpful perspective and presence at that table. Here is the most recent project update from ALSA that I am aware of. It provides insight into the national and state concepts. http://tinyurl.com/ybx8beu
For the life of me, I can't figure out why (with a disease where Medicare waiting periods are waived) the Medicare files would miss 15-20% of the cases. I must be missing something, but I can't envision 15-20 of every 100 PALS in the U.S. not being on Medicare.
Back in 2007, ALScounts offered a facetious suggestion that we ought to give PALS Costco cards and certainly Costco would know how to keep track of them and their data (see Slog Archive 2007 06). In a world where we consumers have become used to the results of rapid development techniques and project scrums and where Papa John knows what we like and where we live, the time and associated costs with the ALS registry project seem larger than life.
ALScounts still truly believes that we'll never connect the dots if we don't start collecting the dots. I also believe that it's disrespectful of all who die from ALS if we do not retain the clues that their lives and health histories may provide. Since the day I heard that registries are hard work, we've continued to lose many of those clues.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................