Having completed the M. Ali questionnaire myself, I am now participating in
their data gathering program. But...I feel that it falls far short of the
goal I describe in my response to "the little poll". It has been a few months
since I filled out their form but, as I remember, the questions were not
geared toward in depth gathering of personal history in regard to toxic exposures,
infectious diseases, head trauma, etc. This datum gathering program is
focused more on quality-of-life issues and improving on-going care and
rehabilitation which is all very good things and why I will continue to participate in
their program.
Having contacted their office with the question of why they are not
utilizing their program to its fullest by attempting to gather more history of
patient's life style/toxin exposure. Their response was that their program is new,
they are hoping to attract and maintain a larger data base with time and
they are in the process of improving and broadening the questionnaire.
In the meantime, I have come upon the news (to me) that the CDC (Center for
Disease Control) is developing a program to establish a national tracking
system referred to as the "National Environmental Public Health Tracking
Program." Information about this program can be found on the CDC web site at:
_http://www.cdc.gov/nceh/tracking/_ (http://www.cdc.gov/nceh/tracking/) . I am
being told that implementation of this plan will require extensive public and
political support but that with insight & determination we can get it done.
This sounds like an excellent program and a tremendous improvement over our
present system. I am in the process of learning more about it and will be
calling today for some more information. By the way, I've also learned that a
registry of this sort is currently being used in regard to cancer cases in
that hospitals/physicians must register new patients into a central database for
tracking & documentation purposes...don't know all the details but it sounds
like its felt that this is important to cancer research also.
Will post any new info I learn about the CDC's new program...hope you'll
check out their website also.
Dee
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