Re: National Database/Dee

[rayilynlee <rayilynlee@xxxxxxx>]

Dee, I agree with your comments re the Barrow.  Dr. Holly Shill, the 'Chief
Investigator" WAS  going to be my neuro, but dropped me when I had to 
cancel
my first appt due to inability to get there.  I was originally referred to
Dr.Mark Stacey who went to Vanderbilt University shortly before I moved to
AZ.  I'm going to the AZ Medical Clinic near my home and Dr. Pagano is my
neuro.  Apparently specialists are in short supply here in AZ.  After 
almost
4 months I finally got this appt with him last week.

Do you live in AZ?
Ray---- Original Message -----
From: "Dolores Buente" <Annieann12345@xxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Monday, April 25, 2005 6:02 AM
Subject: Re: Training document for MD's - National Database


> 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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