Tom, your plan is very logical and expresses everything I had hoped this group would do. We set ourselves up for success rather than failure By having a narrow focus, and sticking to our unique strengths that come from being people with Parkinson's. I've bolded my thoughts to add onto yours.
sheryl

1) Do we need a global database of patients?

YES

2) What is the database for and what information do we need from those registering?

To encourage patient involvement/advocacy
To disseminate information of particular importance
To canvas opinion on issues
To petition
To issue Press Releases

We only really require - name, age, sex, year of diagnosis, region and country and email address.

YES[/B]
3) Who runs it?

I propose there is a committee of four or five people per region and that there are two regions US and the Rest of the World. LOL Tom... you seem to be familiar with the U.S. map of the world.

4) How do we promote it?

Word of mouth and a central website where people can register. The front page would direct people to one of the two regions which would link to two totally separate pages. I think support groups could be a big help in getting the word out, as well as targeted press releases, and perhaps just one vocal Congressman who can help us from the inside.

5) Should there be a video?

No. I can’t see the point in it really. And it would be expensive. AGREE

6) What should the video be about and who should organise it?

N/A. What we need is hard data and a clear message as to why it is important. Then we gain momentum through word of mouth and exposure

7) What rules should be applied to the use of the database?

I think best to leave that decision until a bit later. It can be later, but must be before we solicit database info. I could not in clear conscience ask patients to sign a blank check, not knowing who will have access to their info and for what purposes.

8) Do we use the database for commercial purposes?

Absolutely not. That would defeat the object. The database should be used by patients for patients only. YES

9) How are future decisions about the database made?

The two committees would share everything and would be responsible for making decisions on what is communicated to the database and how.

10) What do we call the database

PD-HOPE THROUGH PATIENT INVOLVEMENT or some other tag line that identifies what sets us apart from similar efforts