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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" <[log in to unmask]> To: <[log in to unmask]> 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 > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn