[indigogo]

(this post is cross-posted on the "What's wrong" thread)

Seems like there's a lot of interest in at least 2 kinds of databases (email for advocacy & patient data for possible sharing).

Doc John's generous offer to us is pertinent to database formation. In order to move forward on this project as a whole, perhaps we should set up a meeting online with Doc John and those of you who are interested in developing the databases.

These are the questions I see; I welcome others to identify theirs as well:

1. Two databases?
2. One for email registration / advocacy / membership
3. One for other data gathering
4. Is Doc John able to host one or more of these?
5. How does Perry's project interface with Rick's proposal?
6. Is it possible to go forward with the simpler, email database first while we iron out the details of the second?

If you are interested in participating in the database process, give us a shout out here in this thread or PM me.

Doc John - what is the best way to set up a meeting with you?

For everyone: building a medical, potentially research-applicable database is a significant undertaking. I hope any and all of you who have an interest in this endeavor get involved. Remember - this is a patient-driven, patient-run project. Please take the time to think about getting involved in this unique opportunity to have a voice in the research process!

For those of you not interested in the details of the databases, join me for continuing discussion of how we build a website platform to host the databases plus create a place to gather the power of the patient voice.

Going back to the original post by Todd: I think there is a sense of powerlessness (is that a word?) about uniting the orgs for the benefit of the patients.

But I also know that we do have the power to unite patients in a way to harness that power. The goal is to be able to influence and educate all of the organizations devoted to Parkinson's disease about what the patients and our families and friends want and need regarding care, treatment, and cure. One of our "wants and needs" is a united organizational front. Perhaps we will have greater influence if we also present a united front.

[lindylanka]

Am interested in both database ideas, agree that it could be done better than anything already out there

1. Two databases?
2. One for email registration / advocacy / membership
3. One for other data gathering
4. Is Doc John able to host one or more of these?
5. How does Perry's project interface with Rick's proposal?
6. Is it possible to go forward with the simpler, email database first while we iron out the details of the second?

Suggest that the simpler email database is the urgent priority in order to grow a participating community. Would be happy to make some contribution.......

Lindy

[DocJohn]

Yes, we can host as many databases as needed.

There are many different ways to capture email addresses into a database. There are many open source programs that allow you to do just that (usually as a part of a newsletter software, but you can use it for any purpose you need).

My schedule is booked until the last week in Aug. or first week in Sept. Just PM me with a date and time and we can setup a conf call.

DocJohn

[Jaye]

Is there any further info on this meeting? If no answer, I will assumed that prospective participants will be notified.
J.