HER2 Incidence by Geographical Location
 

At long last, the survey.

Considering the amount of time that has elapsed, you'd think it would be more complex.

http://www.surveymonkey.com/s/YJ27JNQ

I'm reluctant to post the login here in plain view, but if anyone wants to look at the results in their raw form, PM me, and I'll send you the particulars.

If I've missed something, please let me know, and I'll get it fixed.

Re: HER2 Incidence by Geographical Location
 

Afterthoughts...

Not sure I should have included the town.
Wondering if I should've asked about residence in the 10 years prior to diagnosis.
Hoping others will offer constructive criticism so we can make this better.

Re: HER2 Incidence by Geographical Location
 

just completed. I too think town may be overkill especially as,hopefully, lots of countries will be included?

I just spoke to onc last week he said West Australia has a Her2 rate of 10% versus the Sudan with 25%? Interesting eh?

Re: HER2 Incidence by Geographical Location
 

Oh, yeah, well, there's already a big functional problem: I didn't write the PR/ER status questions in a way such that they'll be useful to see if there's a higher incidence of a particular hormone receptor status in a given area.

As for the towns, the form template is set up with demographic information from which one can choose items separately. I figured that since it was already there, I might as well leave it in, but you're absolutely right--it's overkill.

Re: HER2 Incidence by Geographical Location
 

Done!
Thanks, Rhonda!

Re: HER2 Incidence by Geographical Location
 

Towns are still overkill, but I just discovered that I wasn't looking at the data correctly, so my comment about hormone receptor status is incorrect.

As soon as we have a few more responses (last time I looked, 23 of us had taken the survey), I'll start to compile the data. I think I can do it in Excel and then upload it to Google Docs...or something like that. I'll figure it out. And again, if anyone wants to look at the data within the account, just send me a message, and I'll send you the login.

I'm now on paragraph 3, and the actual point of this post is to bump the thread so more people will see it.

Re: HER2 Incidence by Geographical Location
 

Are you interested in where we live today or where we lived when first diagnosed?

Re: HER2 Incidence by Geographical Location
 

Hi Nancy,

First diagnosed is probably a more useful answer.

(Were I adept at survey construction, I'd likely have realized that what we want to know is where you lived when diagnosed and, more importantly, where you lived in the 5-10 years prior to diagnosis. Alas, I blew it. Edited to add: I would fix it, but by the time I realized my mistake, we already had responses.)

Re: HER2 Incidence by Geographical Location
 

Haha- i've lived *here* my whole life so it doesn't matter for me! Interesting stuff-thanks!

Re: HER2 Incidence by Geographical Location
 

Rough tally of the results so far. (The numbers in the first column match up with the numbers from the individual responses. I put them in so that when someone sees a mistake, it'll be easier for me to fix.)

If we want a large sample, posting the survey link to the HER2 forum at BCO is probably the next thing to do. I'm torn about that, though, because I have an idea that we could make it a little more complex and get such useful information as, say, age at diagnosis.

For the record, I'm finding this a lot more interesting than doing what I ought to be doing now that I've got enough energy to do anything at all. :)


Edited to remove graphic. Link to results, here:

https://www.dropbox.com/s/bmjt4nq4cz...%20Survey.docx

Re: HER2 Incidence by Geographical Location
 

I think you Rock! Rhonda, I do appreciate the time and effort you are putting into this. Even more so the fact that you are enjoying it! Thank you! Thank you!

Re: HER2 Incidence by Geographical Location
 

Thank you so much for all this Rhonda I too think you rock!!

Re: HER2 Incidence by Geographical Location
 

Y'all are so sweet, but I think "rocky" may be more apt at the moment.

As an example of that, I meant to ask Jenny about her onc's statistics, and then I just...forgot. Now that I remember, though...Jenny, can you ask him where he got those numbers? I've googled myself silly looking for a geographical breakdown for HER2, and no matter what search terms I use, I get garbage.

Anyway, here's a link:

https://www.dropbox.com/s/bmjt4nq4cz...%20Survey.docx

I didn't want to keep pasting updated lists, so I am sending you to my Dropbox instead, and I will let you know each time it grows. As of this morning, we have 36 responses.

If anyone has trouble with the link, please let me know.

Re: HER2 Incidence by Geographical Location
 

Just added Barbs info
Thanks;
Mike

Re: HER2 Incidence by Geographical Location
 

Thanks, Mike.

We're up to 48 responses now. I also asked about posting the survey to BCO, and I'm waiting for a decision from the moderators.

Re: HER2 Incidence by Geographical Location
 

Are we going to put this at the top of the her2 group so it can be seen all the time? Thanks again Rhonda your amazing!

Re: HER2 Incidence by Geographical Location
 

We now have 63 responses.

I'm not sure if I mentioned this, but on Wednesday, I asked permission at BCO to post a link to the survey in two of the forums. I was told my request would be reviewed, so I'm waiting patiently for a reply.

I still can't find anything in Google, but I cannot fathom that keeping track of this is not being done by someone somewhere.

Re: HER2 Incidence by Geographical Location
 

added my info

Re: HER2 Incidence by Geographical Location
 

Updated with your response, Leah, along with several more.

Y'know what would be nice, Nancy? Instead of sticky for just the survey, it might be helpful to have a sticky post with links to key information in these forums. A link to the survey could then be included in that post.

IMO, the least confusing way to do is to have one person responsible for the original post, which will then be updated as needed. Discussion can follow within the same thread, but it will be the original post to which others can be directed when they have questions about specific subjects.

I have no idea if what I just wrote makes any sense. I'm all a'boggle today.

Re: HER2 Incidence by Geographical Location
 

My info added, thanks for doing this.