my answers in purple

1) Do we need a global database of patients?

YES agree

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. agree

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

We should consider writing grant(s) to pay professionals to set it up and host it

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.

yes - plus (in the US) contact state & local PD groups, post on blogs, message boards etc

5) Should there be a video?

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

Why not - if patients & volunteers want to do it themselves

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

i'd assume it would be for some aspect of awareness, but it would be up to whoever wants to work on it

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

I think best to leave that decision until a bit later

details later, but ensure that when people sign up, they know why, and how their data will be used

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. agree

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. agree

10) What do we call the database

PD-HOPE for all