Which People With ALS Count?

Dear CDC,

You published your first prevalence report from your ALS Registry in 2014 and asserted that ALS was white guys' disease.

The next day you were warned of publishing assumptions based on incomplete data in a thoughtful paper written by a man with ALS.  You obviously didn't pay attention.

You kept misinforming in the next annual report published in 2016.

We persisted to try to point out that we don't know what we don't know.  Which dots was the CDC collecting?

And here we are today with your new report that should cause outrage among all who have been paying for this Registry.  You finally admitted that you don't know what you don't know.

We repeat, the CDC ALS Registry found only 2720 people with ALS in areas where other studies identified 4767 people in a corresponding time period.  Of the 2047 who were missed, they were more likely to be people of color and younger than the group that the CDC ALS Registry found.

This is more than an "oops" moment.  This is serious.

Our data represent us.  With a poorly understood and poorly diagnosed disease, the Registry's failure to count some demographic groups has real consequences.

1. We don't know how many cases of ALS are not diagnosed before people die.  Saying that ALS is white guys' disease can be a self-fulfilling assertion.  How many doctors miss the ALS diagnosis in people of color?  After all, the CDC said it was mostly white guys' disease. 
2. Good epidemiological data should inform science and priorities.  Your misleading data are perhaps steering precious research funds down some wrong paths.
3. Finally, you brag of your Registry's old-fashioned emailing system to inform some people with ALS of some clinical trials.  Now we know it actually contributes to the problem of lack of diversity in trial participation.

Every person with ALS counts.  We must stop the madness of publishing data that suggest that all people with ALS look like the incomplete subset of people that the CDC's ALS Registry found.

This should be the end of the CDC's ALS Registry.  An algorithm, process, and reporting that systematically discriminate are just wrong.

Sincerely,

A Disappointed ALS Advocate and Citizen and Taxpayer

Are You Sure You Want To Drive Down This Foggy Road?

Transparency.  It's a word that every not-for-profit knows is important.  We must not take it for granted.

The fight against ALS is fortunate to have multiple industries with business interests in selling services and products to those dealing with ALS.  Many of the companies in these industries have generous philanthropy programs.  We are grateful for those.

Over the past few years we have seen the generosity lost in the fog of the word partnerships.

The corporate logos on websites and banners are not accompanied by any indication of the sizes of or restrictions on the donations.

Not-for-profit communications that shed light on services and products to benefit those dealing with ALS do not share that there have been charitable donations from those fine "partners."

Transparency.  We need to take it seriously with policies and disclosures that lift a potentially dangerous fog.

Organizational blind spots are bad enough. Why would we drive into a dense fog?

Ahoy! Tweet Us Some Doubloons of Valuable Content Thar

We're not mere sprogs.  We're interested in the science.  We care about clinical research.

This week NEALS is holding a big annual conference in Florida.  The agenda is extremely interesting for those interested in ALS clinical research and changes that may be in the wind.

https://www.neals.org/uploads/blog/doc/2017_Annual_NEALS_Meeting_Agenda.reformat_v.1.0.pdf

The meeting is not webstreamed to our knowledge.  A few (including @NEALSconsortium ) have tweeted or posted on Facebook.  Unfortunately they have not given us any insights into valuable content.

There was the news of the Pirate Cruise --

We get lots of title slides and pictures of presenters, but we get no content.

There was a special kind of irony when we saw this slide.  Were they actually talking about "nothing about us without us" without us?

And we learned about the Luau.

The dozens of people with ALS who have been trained at the post-conference CRLI sessions in past years may actually be interested in the science and clinical research processes you are discussing this year.  Hundreds of us who donate and advocate for better clinical trial participation care deeply about the valuable discussions that take place after all those title slides.

Avast, ye.  We're here. #PatientsIncluded #EveryoneIncluded , please.

Aloha.