Over and over and over, year after year, decade after decade, ALS has become a deja-vu disease. People with ALS try things. People with ALS experience things. People with ALS have theories about possible triggers to their condition. When these people with ALS die, many of the clues that their lives and experiences harbor are buried with them. We waste our most valuable resource in the fight against ALS -- information.
There are important ways that people with ALS can contribute their information for those who follow.
1. The National ALS Registry administered by the CDC has a self-enrollment portal that will insure that a person with ALS's basic epidemiological data are captured. There are also periodic risk-factor surveys that will address some of those possible triggers. Please encourage those with ALS to participate at www.cdc.gov/als .
2. Every person with ALS tries things. Some of those things are simple like a special diet or vitamins. Some of those things are exotic treatments. Regardless of what those things are, it is a terrible waste not to capture some basic data around the things tried and the results (or lack thereof) that the patient experienced. A convenient place for tracking such things so that others may learn is in the patient profile area at www.patientslikeme.com . The website provides an orderly framework for storing and searching for data.
Information lost in the fight against ALS makes it the disease where new patients constantly have to re-invent wheels. Information lost also means that scientists often ignore some of the simple things that past patients have found helpful. This is a dreadful waste.
If you are a patient, please don't let your data go to waste.
If you are in a position to influence or help patients, please step up.