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.

Wednesday, May 7, 2014

Today Is Brought To You By The Letter "Q"

Click here for the ALSA legislative priorities.

We hope that the following questions will be addressed before we are asked to advocate for more funds on Thursday:


·         How have the Registry funds been spent in the past few years and what are the plans for the $10 million being requested?  Approximately how much is attributable to the cost of data files, basic data file mining, website, risk-factor surveys, patient support, analysis and reporting, travel and meetings, clinical trial matching, promotional materials, special studies, local studies, biorepository feasibility, etc. ?  

 ·         Who have been the government contractors on the project and what are (or were) their roles and deliverables?

 ·         Has anyone re-measured the Rob Tison metrics?  If so, what were the results?

 ·         Do you know what percent of the identified cases of ALS were found in data files only, in both data files and self-enrollment, and in self-enrollment only?

 ·         Do you know how many newly diagnosed cases of ALS enter the ALSA clinic system annually?  Do you know how many of those have self-enrolled in the Registry?

 ·         How many clinical trial enrollees has the Registry notification produced?

 ·         How are the participants for the Registry annual meeting, for the DOD ALSRP Integration Panel, and for the DOD ALSRP Peer Review group chosen?


Today is brought to you by the letter "Q."

We hope that tomorrow will be presented by the letter "A."

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