Re: Training document for MD's - National Database

[Dolores Buente <Annieann12345@xxxxxxx>]

Thank you Ray and Linda for your information concerning the Barrow
Neurological Institute's data base and the California Parkinson's Disease 
Registry.
While I am not familiar with California's registry, I am participating in 
the
Barrow database program and have twice now filled out their questionnaire. 
 I
believe the first time I completed their questionnaire was about 6 months 
ago.  I
just completed and submitted their most recent questionnaire a few days 
ago.

while I feel that the Barrow's questionnaire serves a purpose in gathering
data that is pertinent to people living with Parkinson's disease I feel 
that it
falls very short in asking personal history questions that could determine 
a
link between environmental/genetic causes of Parkinson's.

Upon completing the 'first round' questionnaire, I notified the staff at
Barrow's that I thought  their survey was lacking in this respect.  They 
responded
that they were attempting to refine and improve their project and it would
take some time to make needed changes.  Upon completing the 'second round'
questionnaire (which I thought was an improvement over the first) my 
comments to
Barrow's were that I still think that the survey questions lean toward
information gathering that better serves pharmaceutical/physician interest 
over PD
cause/cure interest.

I've printed a copy of my completed questionnaire and will keep it on file 
so
that I will have a reference to future questionnaires.  I am hoping that, 
in
time, we will be seeing questions on the survey that will pertain to 
lifelong
personal history data gathering such as
a)  chemicals that you've been exposed to/or worked with.
b)  trauma to the head (any incidents that have occurred since infancy) and
any serious symptoms as a result of the injury.
c)  viral or bacterial infections since infancy (herpes infection, whooping
cough, polio, encephalitis, etc.)
d)  family members who have/have had neurological disorders (Parkinson's
disease, essential tremor, epilepsy, Alzheimer's, Huntington's disease, 
etc.)
e)  age at which symptoms of Parkinson's disease presented and factors that
influenced your life prior to/or at the time the symptoms presented.  ( 
stress,
trauma (either emotional or physical)  menopause, illness, surgical or
medical procedure which involved anesthetics, work or leisure activities 
that
involved use of pesticides or chemical agents.

I'm sure this list could be expanded greatly by experts in the field of
Parkinson's research and I feel that these are the type of questions we 
should be
addressing rather than "Does your pharmaceutical health plan cover generic 
or
brand name drugs?"  "What is your co-pay?"  "What is your yearly income?"  
"How
far do you travel to attend aquatics classes?"

I hope that this post does not sound cynical or unappreciative. This type 
of
research is very important to the Parkinson's community and I am grateful 
for
its implementation.  I just think that there is room for improvement and 
that
this tool can have immense power in answering important questions about
Parkinson's disease if it is used to its fullest potential.

Dee

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